Hi everyone,
An update and some thoughts to share.
Rob’s fatigue and rib pain have continued. On the plus side, he has found a little relief with a lidocaine patch on the ribs.
We learned some interesting things last week regarding the radiation consult we have coming up next week. A quick recap- the radiation consult is scheduled to see if the radiation oncology team think that radiation will help ease his intense, ongoing rib pain which has been worsening.
This is a standard care of treatment for many myeloma patients when warranted by the radiation oncologist, in order to help relieve bone pain caused by multiple myeloma.
Unfortunately, we learned last week that it isn’t “allowed” for the next section of the trial. The consult is still scheduled- this is on the trial side.
Rob is in the standard arm for this trial, which we believed meant 100 percent identical to what he would have if he wasn’t on the trial.
Well, that isn’t the case in terms of adding additional therapies to the standard care ( though it is totally normal treatment options for patients not in the trial who are on the same drug combo as Rob is).
I remember hearing about these additional therapies (like radiation) at the International Myeloma Foundation conference we attended in Charlotte about 5 years ago. They also talk about them regularly at the multiple myeloma community on Smart Patients (online resource). This isn’t new…it’s standard.
It hurts Rob to hold a tumbler.
His myeloma #’s coming down was/is amazing, and this pain shouldn’t be happening.
Also last week, Rob met with Supportive Oncology department (formerly known as Palliaitve Care department). They were amazing as usual in their knowledge and helpfulness.
She recommended a consult with their (Supportive Oncology Department) oncologist, who specializes in treating musculoskeletal pain in cancer patients in the form of nerve blocks. She wasn’t sure if it will work or be a possibility, but wanted to at least get a consult in (this is in addition to the radiation consult).
Well, we ran this by the trial team, and they have to see if it’s allowed. They weren’t sure and they will get back to us.
Again- both radiation and treatment by the Supportive Oncology doctor in the form of nerve blocks are completely normal treatments used in MM.
I know and appreciate the importance of clinical trials. We appreciate everyone who helps make those happen, and they are lucky to have such dedicated team members doing so- no doubt about that. 👍
Our frustration is how these restrictions impact Rob’s options for pain relief.
After seeing 3 options not available to him to help with pain due to the trial, something has to give. (The concern of tyelonal may impact bilirubin, which will delay treatment; radiation not allowed; pain block may not be allowed as well). These are 3 regular, standard options which could provide relief.
Thank you for listening, and thank you so much for your continued support and love!
I’ll be back this coming week with an update.
Side note: Newcomers to multiple myeloma who have found this blog: The Smart Patients community I mentioned is one of the best online resources we have found for multiple myeloma education and support. I’ve been a member there since 2018. Come join us for support and knowledge.
Keep Pounding Rob! 