Hi everyone,
A quick update to share. Rob’s had a rough few days. Bad fatigue (worse than usual), stomach problems, and today, he is very pale.
He’s been able to do liquids and stay hydrated, but he is definitely “dragging”- in his words.
Please keep him in your prayers for his stomach to feel better, color to return, appetite to come back, and just as important – his joyfully mischievous ways we all know and love to return quickly.
Thank you for being here! ❤️
Tag: Multiple Myeloma
May 8th Update
Hi everyone!
Time to celebrate some wins! 🎉🎉🎉
This morning. Rob was able to get some exercise in for the first time in over a month! He waked 1 mile!!👊👊🎉🎉🎉
He also had no rib pain when doing so. This is HUGE!! 🎉🎉🎉🙏🙏
Also, Rob’s myeloma labs came back, and look good. The lambda light chains (myeloma markers) did show an increase, but they are still in the normal range.
We believe fluctuations that remain in the normal range are just –normal. When they begin to spike routinely (like what happened earlier this year) is the sign of myeloma activity. They are re-checking these in 1 month.
Rob has graduated from having treatment weekly at LCI to going every other week, and he continues the chemotherapy at home nightly.
We are thankful not to have to be at LCI every week. We are incredibly grateful for all they are doing at LCI to help Rob Keep Pounding! 🎉🎉🎉🎉🙏❤️
Thank you for all of your words of encouragement and support!! ❤️❤️❤️❤️
Radiation Complete
Hi everyone,
Rob completed 5 days in a row of radiation yesterday like a champ! 👊👊❤️
It has helped decrease the rib pain. He says he can tie his shoes and brush his teeth without the pain increasing to a 6 or 7. It also does not increase when he walks right now.
The pain still there at the level where it was before it began increasing in the intensity (a “3”), BUT he has noticed a definite improvement.
We are so grateful for the radiation oncologist, radiation techs, nurses, and everyone else in that department who helped him this past week!
Side effects are hiting hard. Rob has pretty bad fatigue. The lotion has helped with the burning. We didn’t ask about the cooling lotion, because the Lubiderm lotion has been doing the trick.
Next week, Rob will have a busy day back at LCI. He’ll have labs, appointment, then we leave LCI to drive just a few blocks over to the CVS Specialty Pharmacy, where he picks up oral chemo. Then, back to LCI for pre-meds, wait an hour, and then he gets the Daratumumab. He’ll begin the next oral chemo that night, for 3 weeks on, one week off.
The next cycle schedule will change a bit, and Rob will be at LCI every other week for treatment instead of weekly- a welcome reprieve.🙏
We will also learn if Rob’s treatment is continuing to work next week, as they are drawing myeloma labs. They are also going to be scheduling a bone marrow biopsy in May.
Thank you for helping us keep pounding, your support, and your tips!
To anyone else facing challenges as well, Keep Pounding!!!❤️❤️❤️
Radiation Oncology Update, April 26
Hi everyone,
We met with the radiation oncologist yesterday.
Together we reviewed and compared the images from PET scan in January to the X-ray taken a few weeks ago, specifically the new area of concern on the 11th rib. This is the one which we have been advocating for answers about, and the one Rob’s hematologist oncologist called about Monday.
In the radiation oncologist’s words, there is “substantial difference” in 11th rib damage. He said you could clearly see the damage from the x-ray taken a few weeks ago vs. the January PET scan.
His words, in part, from the doctor notes-
“Painful plasmacytoma, right 11th rib”
“Known right 3rd rib involvement but new right lower lateral chest wall pain since February, better corresponding to a new lesion recently seen on X-ray in the right 11th rib.”
Rob will begin radiation 5 days in a row, beginning next week. This is in addition to the ongoing weekly treatment at LCI and oral chemo at home.
The purpose of his radiation is to help the ongoing rib pain, which has gotten worse and constant over the last 7 weeks due to the myeloma causing bone damage.
His hematologist oncologist may order additional scans to examine the rib damage (several areas of concern). She didn’t want to order a scan until she learns what scans radiation oncology requests (so that he isn’t doubled up on scans).
We are beyond grateful for the radiation oncologist and hematologist oncologist developing a plan and timeline for Rob. 🙏❤️ We are incredibly lucky to have both of these two doctors guiding us through this. ❤️❤️❤️
We hope that this radiation will help Rob’s pain that has occurred from the multiple myeloma damage. #KeepPounding
The next multiple myeloma labs will be checked in a few weeks, and I’ll update the results here.
Thank you for your support and encouragement in helping Rob to Keep Pounding! ❤️❤️❤️
Great News!!!
First- AMAZING news!! Rob’s lambda light chain markers are NORMAL!!
This is after 5 weeks of treatment, which continues for cycle 2. Since Rob has lambda light chain myeloma (vs kappa light chain myeloma), these markers let us know how the multiple myeloma is responding to treatment.
We are absolutely elated by this!!
He began cycle 2 this week. This will be for 4 weeks in a row. The 3rd cycle will be a bit more spaced out, and I’ll update about that closer to time.
To clarify- this treatment protocol is what he will remain on until the next relapse.
This is what is unique and challenging about multiple myeloma, in that it continues to evolve, becoming resistant to drugs like it did to the last treatment he was on. As a result, he won’t be on this for “just a few more cycles.”
Since it is thankfully working, he will be on it until the next relapse. We are extremely grateful for the number of treatment options available now vs in the past!
Other updates:
They are scheduling a consultation with the radiation oncology team to see about doing radiation on his ribs.
His pain has increased there big time, and is now constant.
An x-ray done this week showed 2 areas of concern, which we think are consistent with multiple myeloma, based on the lab report indicating as such.
1 rib we knew about (rib 2), but the report mentioned rib 11, which is new.
They will be closely monitoring these areas with imaging and testing as Rob continues his treatment.
Another result that came in last night was high protein from the 24-hour urinalysis. It was high last month, and has increased again. This will also be closely watched.
Thankfully, his other labs look amazing!!👏👏👏👏
We want to share the entire picture for those also going through the process, and to keep everyone on the same page. 🙂
There is so much we are learning about being in a clincial trial. We will work on that for a future post to share with anyone else considering a trial.
A HUGE thank you to everyone who has been so incredibly supportive through this!! We are beyond fortunate to have such an incredible Keep Pounding team on our side.
Thank you!!🙏❤️
For anyone else facing challenges, Keep Pounding!!👊👊❤️❤️❤️
Trial starting next week!
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.
Thank you for your love and support!
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! ❤️❤️❤️❤️
Leap Day Update
Happy Leap Day! 🙂
Today was a long day at Levine Cancer
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! ❤️
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! ❤️
Keep Pounding Rob! 