Week Two Update

Thank you so much, NB family and JS family, for this amazing painting and encouraging words!!❤️❤️❤️

Hi everyone,

It has been a week of adjustments, and Rob continues to Keep Pounding despite the challenges.

He has had 2 treatments at the clinic (the Daratumumab and Dexamethasone, along with pre-meds before) last week and yesterday. He takes the Pomalidomine every night at home.

I’m going to explain the side effects and what we are doing to try and help them.

1. Excessive dry mouth and throat, which has led to trouble talking longer than a few sentences without coughing, sounding hoarse, or having  to drink lots of water.

2. Increased heart rate

3. Increase neuropathy pain

To help with this, here is what we are trying thus far:

For the dry mouth and throat/hoarse voice: We are using  humidifiers, as I read about this from other cancer patients experiencing similar dry mouth/thorat/hoarseness  symtoms. Rob thinks this is helping.

He has a dry mouth spray, and dry mouth rinse he is trying, which I got yesterday after talking with the PA and clincial trial research nurse. He said the spray works for about 45 minutes.  We are trying a different spray when it arrives tomorrow.

The ones he has now are small bottles, making it easy to take with him.  I’ll update on how that is working soon, in case it can help anyone else as well.

For the increased heart rate, they are monitoring it carefully. Thankfully, today, the day after treatment,  his  resting heart rate- while still high–is lower than last weeks resting heart rate the day following treatment, which is huge! We hope it continues to improve.

For the neuropathy, we are increasing his visits to acupuncture at the Supportive Oncology department at LCI. This has helped in the past, so they think increasing it will help again.

Along the neuropathy lines, Supportive Oncology recommended a compound cream. We have to run it by the trial nurse (pretty sure it is ok, but when in a trial, you run everything by them).

They said  that the pharmacy  gives you paperwork to file for insurance for this compound (they don’t file). I’m mentioning this in case anyone else dealing with neuropathy comes across this as an option. I’ll update as we learn more. I have heard great things about compounds for neuropathy from several people, and we hope it helps Rob as well.

If anyone reading has a tip for helping hoarseness/dry mouth and/or neuropathy pain, please reach out to me (Brandii), or leave a comment. Thank you!

Rob is handling these side effects with determination and grace. His attitude, spirit, and drive are simply amazing.

Thank you for your love and support!!

For anyone else facing challenges, Keep Pounding!!❤️❤️❤️