Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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Hi David- We are at a bit of a stressful cross roads. My dad continues to look and report feeling good. We just did full skeletal x-rays again and all came back clear of any sign of lesions from his multiple myeloma (MM). However, MM blood counts are climbing. His M protein level continues to climb slowly. Back in the summer when he was diagnosed, it was 1.7. now it’s 2.8. Apparently his free light chains (normal is 20) started at 700 in the summer and are now 2300. His WBC count for the first time reached nice normal levels, but platelets remain low, and hemoglobin hovers around 104 (his baseline was 143).
Princess Margaret oncologist says the burden on his body has doubled and she wants him to start a clinical trial that he was denied for back in September (we started with Dr. Gonzales October 2, 2015). The clinical trial includes 3 drugs taken via pills-its free in Canada, vs the only other option would be velcade taken intervenously once a week for who knows how long.
My dad’s mood has been very good. He’s active, engaged in life and doing very well from our perspective, but we don’t want to be ostriches with our head in the sand and wait for crisis before we are forced to do chemo because there are no other options.
HIs Princess Margaret oncologist doesn’t know that we’re doing Dr. Gonzales therapy, so they keep monitoring him monthly. Dr. Reece, his PM oncologist goes away on sabatical as of April 13 for 7 weeks and wants to ensure he has a plan for while she is away.
It almost looks like Dr. G’s treatment isn’t really working, but he is not concerned, saying the increase in MM blood counts (in M protein numbers and light chains) are a part of the disease and to stay the course, saying that my dad is the boss and if he wants to do the chemo, of course it’s his choice.
My mom and I are beside ourselves having to have this conversation with my dad for him to make a decision on which way to go- he thinks he has been doing well, feeling good and for him to hear that Dr. Reece feels he’s declining and needs chemo will really blow his mood.
Any words of wisdom? Tracy
It is good to read that your dad is feeling well and that his x-rays are clear. While I understand that ANY abnormal numbers cause concern, it is how your dad feels that is an important indicator. I don’t know anything about the proposed clinical trial so I can’t talk about that.
Not sure of my wisdom but since I wll base my mm coaching on my experience and myeloma research I will give you my thoughts.
The main issue concerning MM survivors is to consider damage- that is to say possible damage caused by toxic therapies versus damage caused by your dad’s MM itself. Just because your dad’s MM blood counts climb a bit does not mean that his MM is causing damage.
Further, I am a big believer in quality-of-life. You report all the right aspects of your dad’s mind-body state. I don’t just mean that he “feels good.” I mean that studies show that he will live longer, no matter what therapy, if he if feeling, acting, good.
Along this line of thinking, if you do undergo conventional therapy please consider evidence-base nutrition, supplementation etc. If he is physically active then moderate therapy, Velcade, combined with moderate daily exercise, anti-MM supplementation that has been shown to work synergistically with Velcade such as curcumin and resveratrol may satisfy both you, your mom AND your dad.
Regarding the three of you working through your dad’s MM, you all matter. Yes, I believe in the cancer survivor to be in charge of him or herself but caregivers are important. Yes, I think you should all be open and direct with each other (I know, easy for me to say…) but you all should be satisfied with the direction you all choose to take.
Let me know if you have any other questions. hang in there.
“These results suggested that curcumin might enhance the cytotoxicity of PS-341 by interacting with NF-κB, at least in part, through JNK mechanism…”
“The tumors shown to be sensitized by resveratrol include lung carcinoma, acute myeloid leukemia, promyelocytic leukemia, multiple myeloma, prostate cancer, oral epidermoid carcinoma, and pancreatic cancer. The chemotherapeutic agents include vincristine, adriamycin, paclitaxel, doxorubicin, cisplatin, gefitinib, 5-fluorouracil, velcade, and gemcitabine…”
Something I just thought of, am I correct in thinking that you are Canadian? If so, isn’t cannabidiol legal in Canada? C-B-D and Velcade work synergistically as well. Alittle C-B-D with a little Velcade might be fun for your dad… just a thought.