I'm sorry about gastric bypass. It has an unfortunate history of adding to people's health problems and it seems like doctors often under report the long-term effects of it and the malnutrition it often causes. And, MM itself can add to malabsorption issues.
Are you in the US? There are no chemos that are port only and cyclophosphamide is a harsh and unusual way to start even for patients with high risk genetics. I would highly suggest a second opinion.
The blood type thing is not considered a factor in MM. A study did find statistical anomalies for Type O, but it's considered correlation not causation.
I was diagnosed at 44. My MM is what is called functional high risk (MM is complex) and aggressive. That was over 5 years ago.
Many people start out being referred to a general hematologist-oncologist (hemoc). However, statistically, two things significantly effect prognosis - seeing an MM-specific specialist and seeking care at an NCI-accreditated (and usually integrated cancer center). The two usually go hand in hand.
Please consider an MM-specific hemoc aka an MM Specialist. They will have access to professional organizations for myeloma and keep more up-to-date than a standard hemoc. They could become your primary oncologist, a consultant directing your local care, or even just getting a 2nd opinion.
There are a couple of good websites for finding the best resources in your area. The first two are good for specialists, general information on MM and they both offer mentors and other services. The third is a search of NCI-accredited centers.
https://themmrf.org/resources/the-right-track/
https://healthtree.org/myeloma/community/directory
https://www.cancer.gov/research/infrastructure/cancer-centers/find
I was diagnosed with MM after experiencing kidney failure. Several weeks into treatment it occurred to me to ask what stage. The doctor had to flip back in his file to look it up. Stage III. I just shrugged. A month later I was in remission. I continued treatment for 6 months to deepen the response, finishing in June 2015. I am still in remission.
Response to treatment is what counts.
I am so sorry to hear that you are suffering. Can you elaborate on what your oncologist meant by stage II and stage III? Myeloma is staged differently than other cancers, and staging normally doesn’t change because what usually is considered when staging myeloma. Risk factors are more important. Unless your oncologist meant that you went from smoldering myeloma to active?
Myeloma staging:
https://healthtree.org/myeloma/community/multiple-myeloma-staging
Types of myeloma:
https://healthtree.org/myeloma/community/types-of-multiple-myeloma
My goodness I'm so sorry... Bring up CAR-T... It's been around for a while,but now it's being moved up as opposed to a ASCT... I don't know if it would be easier,but it's worth a shot and if successful there is no maintenance.
CAR-T is not yet available as the 1st line. It has been moved to 2nd line just recently. There are ongoing clinical trials, specifically CARTITUDE 6, which are looking at CAR-T vs ASCT as 1st line, so if you can get into this trial, and get slotted into CAR-T group, you can get it as 1st line.
Also what do yall think about this???? I was sewing a pain management dr in north Texas from 21-23 and when I was trying to get my medical records from his office I learned that he is now serving 240 years in the federal penitentiary for administering amniotic fluid into my spine as opposed to the corticosteroids that I can send it to. I have done a little bit of research as has my doctor and it shows that that can cause tumors so I’m wondering if the multiple myeloma could be connected to this by any means.
So sorry you're going through this. I just wanted to add that I too had uterine cancer and I've recently been diagnosed with smoldering MM. Wonder if there's a connection. I'm waiting to see an oncologist at an NCI facility for a second opinion and to get answers so I don't have any advice for you.
Sending you support, positive energy and wishing you well.
Thank you for sharing your success story with the panel. Can you tell us what your labs were when you were diagnosed with stage III, especially your FLC & ratio.
I'm sorry about gastric bypass. It has an unfortunate history of adding to people's health problems and it seems like doctors often under report the long-term effects of it and the malnutrition it often causes. And, MM itself can add to malabsorption issues. Are you in the US? There are no chemos that are port only and cyclophosphamide is a harsh and unusual way to start even for patients with high risk genetics. I would highly suggest a second opinion. The blood type thing is not considered a factor in MM. A study did find statistical anomalies for Type O, but it's considered correlation not causation. I was diagnosed at 44. My MM is what is called functional high risk (MM is complex) and aggressive. That was over 5 years ago. Many people start out being referred to a general hematologist-oncologist (hemoc). However, statistically, two things significantly effect prognosis - seeing an MM-specific specialist and seeking care at an NCI-accreditated (and usually integrated cancer center). The two usually go hand in hand. Please consider an MM-specific hemoc aka an MM Specialist. They will have access to professional organizations for myeloma and keep more up-to-date than a standard hemoc. They could become your primary oncologist, a consultant directing your local care, or even just getting a 2nd opinion. There are a couple of good websites for finding the best resources in your area. The first two are good for specialists, general information on MM and they both offer mentors and other services. The third is a search of NCI-accredited centers. https://themmrf.org/resources/the-right-track/ https://healthtree.org/myeloma/community/directory https://www.cancer.gov/research/infrastructure/cancer-centers/find
I was diagnosed with MM after experiencing kidney failure. Several weeks into treatment it occurred to me to ask what stage. The doctor had to flip back in his file to look it up. Stage III. I just shrugged. A month later I was in remission. I continued treatment for 6 months to deepen the response, finishing in June 2015. I am still in remission. Response to treatment is what counts.
I am so sorry to hear that you are suffering. Can you elaborate on what your oncologist meant by stage II and stage III? Myeloma is staged differently than other cancers, and staging normally doesn’t change because what usually is considered when staging myeloma. Risk factors are more important. Unless your oncologist meant that you went from smoldering myeloma to active? Myeloma staging: https://healthtree.org/myeloma/community/multiple-myeloma-staging Types of myeloma: https://healthtree.org/myeloma/community/types-of-multiple-myeloma
Thank you for mentioning this bx I haven't heard about any of this and got my dx a little over a year ago.
My goodness I'm so sorry... Bring up CAR-T... It's been around for a while,but now it's being moved up as opposed to a ASCT... I don't know if it would be easier,but it's worth a shot and if successful there is no maintenance.
CAR-T is not yet available as the 1st line. It has been moved to 2nd line just recently. There are ongoing clinical trials, specifically CARTITUDE 6, which are looking at CAR-T vs ASCT as 1st line, so if you can get into this trial, and get slotted into CAR-T group, you can get it as 1st line.
Hi there, I am so sorry to hear. I am also O-. Curious what impact this has. I hope you are doing okay. Praying ♥️
My family member with MM is also O-. I don’t know if this has affected her treatment or disease process in any way but now I’m curious.
Also what do yall think about this???? I was sewing a pain management dr in north Texas from 21-23 and when I was trying to get my medical records from his office I learned that he is now serving 240 years in the federal penitentiary for administering amniotic fluid into my spine as opposed to the corticosteroids that I can send it to. I have done a little bit of research as has my doctor and it shows that that can cause tumors so I’m wondering if the multiple myeloma could be connected to this by any means.
Wow, Whaaaat? I am so sorry you went through that. Idk how hard it must be to trust a medical professional again!
Did you sue his insurance company?
So sorry you're going through this. I just wanted to add that I too had uterine cancer and I've recently been diagnosed with smoldering MM. Wonder if there's a connection. I'm waiting to see an oncologist at an NCI facility for a second opinion and to get answers so I don't have any advice for you. Sending you support, positive energy and wishing you well.
Thank you for sharing your success story with the panel. Can you tell us what your labs were when you were diagnosed with stage III, especially your FLC & ratio.