Posts by Edward Thompson11

Thank you all so much for responding to my posts; you truly are wonderful people.

I’m currently navigating a bit of a situation. My mom finished her first round of chemotherapy this past Friday (doxo 15 mg, vcr 0.5 mg, using four half-liter bags) and she is now taking 40 mg of dexamethasone daily for four days. She’ll repeat that next week, and then at the end of the month, she starts her next round of chemo. Generally, she’s feeling quite good, but we ran into a complication during the infusion. When they were setting up the IV, the vein actually ruptured, and because the medication is so potent, some leaked into the surrounding tissue. Now, she has the early signs of thrombosis in her arm. Her primary care physician stopped by today, and for now, the advice has just been to use compresses and take pain medication—though I’m honestly not sure how much that will actually help. Does anyone, perhaps vividsailor7, have an idea of how serious this might be? The tricky part is that Mom is practically immobile right now due to a fractured sacrum, so the doctor can only see her if we take her through the ER. Should we insist on having her seen by her Hematologist, or should we wait a little longer to see if the issue resolves itself? She isn't in intense pain yet, but I really don't want to wait until things escalate or until there's a risk of tissue necrosis spreading.

Regarding alternative remedies, I’ve been doing some research, though I’m being very cautious. Right now, she’s only drinking aloe vera juice, which I hope won't cause any issues. For her stomach, she takes ginger and mint tea as needed. She also picked up an E. coli infection recently, so I bought her a specific herbal tea blend for that purpose, though she hasn't started it yet since she is currently on Klavocin. I’ve also gathered some 100% natural apple and quince juices made from wild, organic, untreated fruit, along with some pure chestnut honey and other bee products like honey blends, royal jelly, pollen, and honey syrup. She hasn't started those yet, so if anyone has any insights or opinions, I would be so grateful.

Thank you all so much for your kindness and for all the advice you've shared; you have helped me more than you know.

Dear Hannah Williams51,
I wanted to send my deepest condolences for your loss; I can truly empathize with everything you’ve been through and are still navigating. More importantly, thank you so much for sharing all that helpful information—it really means a lot to us.
We are originally from the Miami area, and after some initial tests there, my mother was transferred to Washington, D.C., specifically to the Mayo Clinic, first under neurosurgery and then over to hematology once the biopsy results came back. She finished her first round of chemotherapy this past Friday, and she’s being discharged tomorrow. She’ll complete the remaining rounds back home in Miami, and then, God willing, if all goes well, she will head back to Washington, D.C. for an autologous stem cell transplant at the same facility. Her Multiple Myeloma is concentrated in her bones, affecting about 30% of her bone marrow, though her blood counts remain steady.
Regarding alternative options, have you happened to hear anything about GNLD products or dietary supplements? A few people have been encouraging me to look into them. The hematologists at the Mayo Clinic tend to be quite skeptical regarding alternative medicine, which makes it difficult to have a meaningful conversation with them on the subject. If you happen to know a hematologist who might be open to discussing these things, please let me know. I also plan to reach out to all the institutions you mentioned. We are holding onto hope for the best possible outcome. The doctors say there is reason to be optimistic. I was wondering, what were you told at the start and during the treatment process? Did your mother undergo chemotherapy and an autotransplantation?
Thank you so much for everything.

Hi everyone, I’m new to the forum. I’ve been reading through the posts here—all the sadness, the struggles, and the incredible bravery... I just wanted to say congratulations to everyone and tell you how much I truly admire you all. Honestly, I’m feeling a bit drained, and I find myself constantly wondering if there's more I can do for my mom. She was recently diagnosed with multiple myeloma—a cancer of the plasma cells. Her plasma cell count is about 10-12% higher than normal, and unfortunately, it has spread to her bones, even though her protein levels and blood work look okay for now. About 40 days ago, she ended up hospitalized due to a pathological fracture in her spine. She’s already completed five rounds of radiation, and this Monday, she started chemotherapy, which should consist of three cycles before she moves on to an autologous stem cell transplant. She’s bedridden right now and unable to move because the tumor has essentially compromised her vertebrae. The public hospital wouldn't perform the surgery she needs, so I managed to find a private clinic where they should be able to operate on her spine in about ten days. My hope is that it will at least allow her to walk again, though the doctors warned us the surgery is extremely complex given the tumor's location. They might discharge her from the state hospital the day after tomorrow. Mom is holding up well. The doctors won't give us a definitive prognosis, but they did mention that with modern medicine, people can live with this condition for decades... Mom is 59.

A few people have suggested I look into alternative therapies, but I just don't feel comfortable taking on that kind of responsibility. Some friends keep insisting that she needs to boost her system with homeopathic remedies and immune support. However, the staff at the hospital aren't really on board with that; they actually mentioned it could be contraindicated with her chemotherapy. I’m feeling quite conflicted. It seems logical to put my full trust in the medical team, especially since she has already begun chemo. But then again, some days the doctors are wonderful and willing to talk, and other days they seem completely unavailable or dismissive. Today is definitely one of those difficult days, and it's weighing heavily on me. Does anyone have any sensible advice? Thank you all so much!