Lambda Light Chain Results

We learned Rob’s multiple myeloma (the lambda light chains lab result) continued to spike, which we expected.

We also learned that his 24 hour urine test showed the lambda light chains present. We don’t know the significance of this, but when we do, I’ll update here.

Now we are just waiting on the bone marrow biopsy results. No matter what it shows, he will still be going in the clincial trial- I believe they just have to wait on the result before starting. If I am wrong on that I’ll correct that info.

The pics below are screenshots from the patient protal. They provide visuals of Rob’s lambda light chains. These are the light chains that indicate myeloma is back.

It’s important to note that some with multiple myeloma may have kappa light chain myeloma, where they would be more concerned with kappa light chains. Since Rob has lambda light chain multiple myeloma, we are concerned with his lambda light chains.

To help visialize, I’ve added two screen shots from the patient portal, which show what his lambda light chains have done the past few months.

Chart 1: You can see that the middle row, “Free lambda light chains” reads 131.82, far from the normal range of 5.71-26.3.

Chart 2: Starting at the bottom, November 2023, you can see how much and how fast the lamnda light chains have jumped.

We will update you when we have more information to share about the expected start date of the clinical trial (probably within 1-2 weeks). Once we know which arm of the trial he is in, I can provide more information on that.

Thank you so very much for being here! ❤️❤️❤️❤️

Pre-screening Process Started

Hi everyone,

Thank ya’ll for being here!❤️

The pre-screening scheduling for the clinical trial has started, with many tests being ordered.
The patient portal shows 34 upcoming tests, many of which are labs.

In addition to the 34 tests scheduled, he will have pre-screening tests in cardiology, pulmonary, skeletal imaging, and a PET scan. Since he had the PET scan recently, we don’t know if that will be scheduled before or after the first round of the trial.

24 hour urinalysis test will be done next week, along with a bone marrow biopsy, labs, and an appointment with his hematologist oncologist.

The fatigue has been increasingly worse. We are wondering if his platelets are low, or if it is from the multiple myeloma coming back (one of the symptoms), or both. We look forward to labs next week to see if they can pinpoint anything that would be a cause.

This is the hurry up and wait part, as he goes through the clinical trial pre-screening process. I will keep updating along the way, and hopefully, I can begin writing about the next line of treatment soon.

We appreciate your love and support through this so much! Thank you!!

For anyone else facing challenges, whatever those challenges are, we are here for you too-please don’t forget that! 🙏❤️ Keep Pounding!!❤️👊

Talquetamab & Multiple Myeloma

Hi everyone,

In trying to break up the information, here is a a short post about the trial.

From the consent forms:

“Talquetamab is an experimental drug for multiple myeloma. The purpose of this study is to see whether chemotherapy with Talquetamab is better than standard treatment for subjects with multiple myeloma.”

Dr. Voorhees, who is overseeing this trial at Levine Cancer, shares more in this clip for those interested. Thank you for being here! ❤️

https://www.youtube.com/watch?v=PUhgepIHo-M&pp=ygUbQml0ZSBwZXRlciB2b29yaGVlcyBteWVsb21h

Consent forms & pre-screening tests

Hi everyone,

Thank you for the continued encouragement, love, and support!❤️

The oncology research nurse specialist called yesterday.

She sent over the paperwork for the clincial trial consent.

Next week, we meet with his multiple myeloma specialist, followed by a meeting with the oncology research nurse specialist.

At the appointment with the oncology reaearch nurse specialist, he signs the consent forms that he reviewed last night, and that begins the process of scheduling pre-screening appointments for the actual trial.

Some of the upcoming screening tests after signing the consent forms at the appointment include (copied from the forms):

Review of medications and medical history

Physical exam by study doctor

Measure height and weight

Measure temperature, breathing rate, blood pressure, oylxygen levels

Measure heartbeat by electrocardiogram (ECG)

Imaging bone x-ray, CT Scan, PET/CT scan to look for disease throughout your body

Bone Marrow Aspirate/Biopsy

Urine sample to measure multiple myeloma proteins in your urine

Blood tests

Breathing tests

We’ll continue to update the blog and share what we learn along the way.

We are feeling excited to get started and extremely anxious at the same time.

Thank you for being here! ❤️

Tuesday, February 13th update

Hi everyone,

Thank you for being here! ❤️

Rob will begin pre-screening for a clinical trial next week at Levine Cancer Institute.

The PET scan results showed a hole in his rib bone, measuring greater than 1 inch, caused by the multiple myeloma.

His lambda light chains have spiked for a 4th time in a row.

Based on his symtoms, PET scan results, and labs, his multiple myeloma specialist confirmed active disease as the result of multiple myeloma relapse.

The clinical trial requires hospilzation in order to manage the side effects.

There is much information we are learning and will be learning, and we look forward to sharing.

To make it as easy as possible to share information here (there is a TON of information), I’ll be breaking up the information in different posts in the coming days.

One final note to those who have found our blog by looking for information on multiple myeloma. If you are newly diagnosed, a word of hope.❤️ There are more and more options for multiple myeloma patients now, even more so than 5 years ago (that’s when Rob was diagnosed). Make sure to find a multiple myeloma specialist who is up to date on the latest developments in multiple myeloma research, including clinical trials.

Thank you for being here, and for helping Rob to Keep Pounding! ❤️