Where to begin?
This morning my latest labs returned with a consistent evidence that since April my cancer is returning, although slowly. My renal function slightly worse. Other labs okay.
I saw my myeloma specialist last Tuesday. She is still in agreement that my myeloma is coming out of remission, but it is doing it slowly enough that we are not in a rush to make major changes, but to plan for that. On the last visit we discussed two possibilities for our next step, either a new chemo called daratumumab, or entering a CAR-T study. Now, the next step is clear, daratumumab, as the study is no longer an option.
Tomorrow morning I’m having a whole-body PET – CT scan. I’ve had a significant pain in my right ribs for about four months and we need to rule out a metastasis (extramedullary lesion of myeloma). If it is, it will require focal radiation treatments. My prayer is that it is a simply strained muscle.
I’m not one to “look on the bright side” because I see that type of thinking as Novocain for the soul. I would rather feel disappointment, than to not feel at all or to base hope on an illusion. Yes, disappointment is my breakfast every morning. Yet, I can still appreciate a beautiful day. With that said, there is a silver (but tarnished) lining to this change. The chemo I’ve been on for 18 months is weak. I only went on this specific chemo because it was right in the middle of the first surge of COVID and my risk of death from COVID was extremely high. My present chemo is the only one I can do from home and that’s why we choose it. Each trip to the hospital in early 2020 was a flirt with the COVID death angel.
Daratumumab is a (weekly at the start) inpatient infusion, being inpatient means that Medicare will cover it. Secondly, it is considered to be a much better chemo (works as a monoclonal antibody against the cancer) and our hope is that my myeloma will respond better. Lastly, the past two chemo’s I’ve been on, both work the same way, and have the number one side effect of diarrhea. I’ve struggled with diarrhea for about eight months now and I hope this new treatment will not have that side effect.
So it looks like I will have to move on to daratumumab by December. My hope is that it will keep me in remission for a few years, until the CAR-T or other new modalities will be perfected to a cure. Yet, I must always be prepared for the worst.
Besides my diarrhea and rib pain, I’m feel pretty well.
Thanks for your interest and continued support during this marathon.
8 responses to “Health Update: 9/14/21”
Thanks for the update, Mike. You remain in my thoughts and prayers. Your contributions to the health of my family members through your expert knowledge of headache medicine and your ongoing presence in the PA world are very much appreciated and valued.
Sorry to hear that Mike, has to be discouraging but, good there are good options still
Such well-written words – “disappointment is my breakfast” – to describe the daily struggle and weariness of it all. You remain in our prayers.
Johnny, I am continuing to pray for you. Bill
On Tue, Sep 14, 2021 at 11:07 AM J. Michael Jones wrote:
> J. Michael Jones posted: ” Where to begin? This morning my latest labs > returned with a consistent evidence that since April my cancer is > returning, although slowly. My renal function slightly worse. Other labs > okay. I saw my myeloma specialist last Tuesday. She is still in a” >
Keep us posted.
If this new chemo is a monoclonal antibody, it should be effective with less side effects; the MCAs will be specifically targeted to infect/attack only the cancer cells.
I had a ringside seat to my mother’s unsuccessful chemo back in 1975, when higly-toxic chemos poisoned the cancer cells maybe 1-2% more than all the other cells in the host body; to this day, I split the kill credit between the cancer and the chemo.
Michael, I’m keeping you, Denise, and your family in my prayers. I was writing a comment earlier but it ended up lost when I went back to reread something in your text. The gist is that I liked your word : Marathon to describe living with cancer. We have much in common. I’m coming up on 8 years next week.
You are such a support to me with my myeloma. You are so articulate and compassionate.
It’s a journey for sure. My time for labs is coming up this week or early next week. Then we’ll see how it goes. Take care. EffieJo
Thank you for the update. I am truly sorry cancer has reared it’s ugly head again! I so hope this new treatment is helpful!