My mother was diagnosed with Multiple Myeloma in July. Her doctor is urging her to decide on a location for her stem cell transplant. Transplants aren't done anywhere near the town where she lives.
Her doctor is recommending either the Siteman Cancer Center in St. Louis, Missouri or the Myeloma Institute for Research and Therapy in Little Rock, Arkansas. We have fortunately been in contact with former patients of the Myeloma Institute in Arkansas but have not found any former myeloma patients of the Siteman Center in St. Louis.
Has anyone been treated at the Siteman Cancer Center in St. Louis, Missouri? If so, would you be willing to share your thoughts?
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Re: Siteman Cancer Center in St. Louis, MO
My wife had her transplant on 6/24/13. She had excellent care from the nurses on 6 floor. Siteman does 400-500 transplants a year. The doctors and nurses will tell you what will happen and things such as infections, fever, diarrhea, mouth or throat sores will happen. The staff will be on any situation. My wife had infection and diarrhea but the doctors and nurses have medicine for the problems. She had Doctor Ravi Vij who is great. Dr Depersio is great but hard to get into. Dr. Goldstein is great. Dr. Yu is a great doctor as well.
The doctors are on a two week rotation in the hospital. You will see your doctor or one of the other doctors during transplant when admitted daily. A hospitalist doctor sees you daily. Physical therapy will see you and provide care as needed. Social workers will see you and help as needed. My wife has a wheat allergy and the assistant director of food service stopped in to get food choices from the south campus and the children's hospital. A doctor in dietary came to check on my wife.
My wife was diagnosed with multiple myeloma in Nashville Tennessee at Vanderbilt university hospital 2/3/2013. We went back home to Evansville Indiana And saw Dr Lafti Hadad. He referred her to Siteman. Met Dr Vij on 2/18/2013, A bone marrow biopsy was done and aspiration was done. The staff was great at it and don't watch YouTube videos of this because Siteman does better and keeps patients pain free. Blood tests were done. 4 days later she Had 90% abnormal plasma cells.
She had four cycles of chemo in Evansville. the first week of June we stayed at Hope lodge on Lindell Blvd ran by American Cancer society. A biopsy was done and found out she was in remission from the chemo. She had a shot one a day for three days to grow stem cells and on the Monday she had Pheresis for six hours to get five million stem cells for at least two transplants. June 21 she was admitted to the hospital, gave her fluids and the nurse , Erica, made a calendar for treatment. 6/22 and 6/23 she received Malphein to kill cells. 6/23 was rest day. 6/24 was her stem cells 6/29 and 6/30 were her worst days. July 4 she was recovering . July 8 she was released. Stayed at the Hope lodge Until 7/12. We saw Dr. Vij and she returned home. follow up visit 7/23. follow up visit 8/19. Next visit is on 9/30. Bone marrow biopsy, 24 hour urine, blood work and if it turns out OK then no more visits to Siteman just to local oncologist. We recommend Siteman to anyone.Get support for caregivers from siteman as well.
The doctors are on a two week rotation in the hospital. You will see your doctor or one of the other doctors during transplant when admitted daily. A hospitalist doctor sees you daily. Physical therapy will see you and provide care as needed. Social workers will see you and help as needed. My wife has a wheat allergy and the assistant director of food service stopped in to get food choices from the south campus and the children's hospital. A doctor in dietary came to check on my wife.
My wife was diagnosed with multiple myeloma in Nashville Tennessee at Vanderbilt university hospital 2/3/2013. We went back home to Evansville Indiana And saw Dr Lafti Hadad. He referred her to Siteman. Met Dr Vij on 2/18/2013, A bone marrow biopsy was done and aspiration was done. The staff was great at it and don't watch YouTube videos of this because Siteman does better and keeps patients pain free. Blood tests were done. 4 days later she Had 90% abnormal plasma cells.
She had four cycles of chemo in Evansville. the first week of June we stayed at Hope lodge on Lindell Blvd ran by American Cancer society. A biopsy was done and found out she was in remission from the chemo. She had a shot one a day for three days to grow stem cells and on the Monday she had Pheresis for six hours to get five million stem cells for at least two transplants. June 21 she was admitted to the hospital, gave her fluids and the nurse , Erica, made a calendar for treatment. 6/22 and 6/23 she received Malphein to kill cells. 6/23 was rest day. 6/24 was her stem cells 6/29 and 6/30 were her worst days. July 4 she was recovering . July 8 she was released. Stayed at the Hope lodge Until 7/12. We saw Dr. Vij and she returned home. follow up visit 7/23. follow up visit 8/19. Next visit is on 9/30. Bone marrow biopsy, 24 hour urine, blood work and if it turns out OK then no more visits to Siteman just to local oncologist. We recommend Siteman to anyone.Get support for caregivers from siteman as well.
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Ceb47630
Re: Siteman Cancer Center in St. Louis, MO
I am sorry to hear about your mother's diagnosis. I was diagnosed early in 2009, but already familiar with multiple myeloma because my father was diagnosed in 1992 at the age of 79, and passed away a short 15 months later. But things are so different, and so much better, now! Treatments have advanced tremendously since then, with further, great strides forward since I was diagnosed.
Soon after my diagnosis (when routine blood work during my annual exam showed elevated protein), I was referred to the Siteman Center/Barnes-Jewish Hospital/Washington University, about a 2 1/2 hour drive from our home in Evansville IN. After 3 months of induction treatment, I had an autologous stem cell transplant there in early July 2009. When my M-spike showed signs of increasing again soon after my first transplant, I had a second transplant right after Thanksgiving of that year. In both cases, my hospital stay was 15 days - not a pleasant time, of course, but not as bad as I expected, and the care was excellent. I felt well-prepared for the transplants, as well as the stem cell collection, because of all of the helpful and comprehensive information shared ahead of time as well as during my stays.
I have been very happy with the doctors, nurses, and others at the Siteman Center. My doctor there (Dr. Stockerl-Goldstein) has always been very informative and caring, willing to listen to my thoughts and suggestions and thoughtfully answer my questions. He is quite 'evidence-based' - staying on top of the latest research, but not jumping onto new treatment options without good evidence of overall benefit vs potential risk, and factoring in overall quality of life as well. I was really excited to see that the Siteman Center/Washington University was recognized by the MMRF early this year for their innovative research (http://www.siteman.wustl.edu/ContentPage.aspx?id=6899).
I've heard a lot of positive things about Little Rock, also - I gather they take a much more aggressive approach to treatment. I can certainly understand the desire to do everything possible to beat multiple myeloma, but I have been very happy with the approach we have taken. I am currently in remission (not complete remission), on Revlimid only as maintenance, and feeling essentially 'back to normal' - other than being a few years older, of course! I know I have been extremely fortunate not to have other negative effects from the disease and/or treatments - no serious bone problems, kidney issues, infections etc.
I hope this is helpful for you and your mother, and would be happy to answer other questions if I can from my experience. When I was diagnosed 4 1/2 years ago, I never thought I would be where I am today - happily retired, feeling great, and able to do essentially all of the things I love (well, that I can afford)! Wishing your mother all the best.
Soon after my diagnosis (when routine blood work during my annual exam showed elevated protein), I was referred to the Siteman Center/Barnes-Jewish Hospital/Washington University, about a 2 1/2 hour drive from our home in Evansville IN. After 3 months of induction treatment, I had an autologous stem cell transplant there in early July 2009. When my M-spike showed signs of increasing again soon after my first transplant, I had a second transplant right after Thanksgiving of that year. In both cases, my hospital stay was 15 days - not a pleasant time, of course, but not as bad as I expected, and the care was excellent. I felt well-prepared for the transplants, as well as the stem cell collection, because of all of the helpful and comprehensive information shared ahead of time as well as during my stays.
I have been very happy with the doctors, nurses, and others at the Siteman Center. My doctor there (Dr. Stockerl-Goldstein) has always been very informative and caring, willing to listen to my thoughts and suggestions and thoughtfully answer my questions. He is quite 'evidence-based' - staying on top of the latest research, but not jumping onto new treatment options without good evidence of overall benefit vs potential risk, and factoring in overall quality of life as well. I was really excited to see that the Siteman Center/Washington University was recognized by the MMRF early this year for their innovative research (http://www.siteman.wustl.edu/ContentPage.aspx?id=6899).
I've heard a lot of positive things about Little Rock, also - I gather they take a much more aggressive approach to treatment. I can certainly understand the desire to do everything possible to beat multiple myeloma, but I have been very happy with the approach we have taken. I am currently in remission (not complete remission), on Revlimid only as maintenance, and feeling essentially 'back to normal' - other than being a few years older, of course! I know I have been extremely fortunate not to have other negative effects from the disease and/or treatments - no serious bone problems, kidney issues, infections etc.
I hope this is helpful for you and your mother, and would be happy to answer other questions if I can from my experience. When I was diagnosed 4 1/2 years ago, I never thought I would be where I am today - happily retired, feeling great, and able to do essentially all of the things I love (well, that I can afford)! Wishing your mother all the best.
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DebSchade - Name: Deb Schade
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: February 2009
- Age at diagnosis: 52
Re: Siteman Cancer Center in St. Louis, MO
Hi. First I'm wishing your mom and your family all the best. I was first diagnosed with multiple myeloma in 2008 and relapsed in 2012. I had both of my transplants at Barnes and can't say enough great things about the doctor's, nurses, techs, social workers, and any other ancillary staff needed during our hospital stay. Everyone is very professional but sympathetic and knowledgeable to the needs of the patients as well as family. They take great care to use proper infection control practices in order to keep up safe but in doing so don't make us feel like we're untouchable. I hope this helps make your decision easier. I hope your mom is doing well and will be in remission very soon. All the best.
Pam
Pam
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PamS
Re: Siteman Cancer Center in St. Louis, MO
Thank you all for sharing your experiences. You have been very helpful. I wish you all the best.
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amurphy
Re: Siteman Cancer Center in St. Louis, MO
I had a transplant at Siteman in April of 2010 for Bence Jones Lambda multiple myeloma. I have been in remission so far, but starting to show some activity. They are very professional and I can't fault them. On the plus side it worked as it was suppose to. My negatives were that I developed a case of C diff and I had a hard time recovering, the latter had nothing to do with Siteman, but a combination of age and a simmering pneumonia that defied diagnosis. I was 71 at the time and i was in the hospital 21 days. I was in remission from Velcade when I went to Siteman.
I think you'll find that the doctors and staff are very open and will answer all of your questions and concerns in the evaluation phase.
I think you'll find that the doctors and staff are very open and will answer all of your questions and concerns in the evaluation phase.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
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