Rob is scheduled to begin the clinical trial next week, at least according to the patient portal (pending final trial approval).
However, we have no idea which arm of the trial he is scheduled for, but hope to know that soon. 2 of 3 arms requires hospitalization to monitor side effects, the other two do not.
We are anxious and ready to begin the new treatment.
It’s definitely nice to see treatment appointments scheduled on the patient portal beginning next week. I should have more info soon, and will update as soon as I do.
We are at LCI now for a few extra labs he needed for trial.
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.
The first appointment consisted of more paperwork for the trial, and he turned in the 24-hour urine test.
This appointment also answered our questions on the PET scan- if Rob gets cleared for the trial (including labs/bone marrow biopsy results)- he will likely not need a second PET scan since he had one recently.
If for some reason he doesn’t meet the criteria on labs, then he will probably need a second one in the future.
Finally, they did a neurocognitive test, and checked his handwriting by having him write a sentence.
The reason for this is because the drugs can cause neurocognitive difficulties. These tests establish a baseline of what his neurocognitive status and his handwriting is now verses how the meds impacts it once he begins treatment. Thankfully, they said side effects are temporary.
Much more to come on this as we learn which arm of the trial he will be going through, and potential side effects. Ya’ll are learning right alongside us, and we are so appreciative of that!❤️
Next up, we had some time for a picnic lunch in the car, and a brief visit in the Keep Pounding lounge. It provided a much needed quiet place to relax in very comfortable chairs.
Next was labs (22 tubes!), and then we returned to the hematology floor for the bone marrow biopsy. I’ll update our blog as labs and biopsy results come in.
For anyone else facing any challenges, Keep Pounding!!
Thank you so, so much for all of your support and love! ❤️
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!!❤️👊
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! ❤️
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):
Keep Pounding Rob! 