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Re: Velcade maintenance therapy - how long?
We do have another trip to Taiwan and another Chinese traditional clinical medicine visiting for acupuncture in Taipei for three weeks on 17th this month after her finishing the cycle 57 maintenance chemotherapy during end of this March. The acupuncture doctor did a treatment cycle of five visits and mention her pain with burning and sharpness after the long term of Velcade maintenance therapy may damage her epithelial nervous. It is not easy to detect the damages by current equipments, and have a good treatment.
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chen5631867 - Name: George Chen
- Who do you know with myeloma?: My Spouse
- When were you/they diagnosed?: Feb. 25, 2011
- Age at diagnosis: 53
Re: Velcade maintenance therapy - how long?
We just finish the 63th cycle last week, and all lab results show no sign of multiple myeloma. We do not know when we should stop treatment, but most of the myeloma specialists we have consulted recommend she continue doing what she is doing if it is working.
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chen5631867 - Name: George Chen
- Who do you know with myeloma?: My Spouse
- When were you/they diagnosed?: Feb. 25, 2011
- Age at diagnosis: 53
Re: Velcade maintenance therapy - how long?
When was your mom initially diagnosed?
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MikeJr - Who do you know with myeloma?: spouse
- When were you/they diagnosed?: 3/17
- Age at diagnosis: 42
Re: Velcade maintenance therapy - how long?
Well, my wife, 53 years old, was diagnosed as multiple myeloma on pancreas (9 cm) and pelvis (15cm) (extramedullary plasmacytoma) on February 25, 2011 with three times of biopsy from early November, 2010. She do not have bone lesions, high calcium, kidney deficiency, and severe jaundices with two stents on her bile duct, but have anemia several years. These tumor shows 95% Pelger-Huet anomaly (PHA) and 5% plasma cells. This is a rare atypical multiple myeloma case and less than 50 cases.
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chen5631867 - Name: George Chen
- Who do you know with myeloma?: My Spouse
- When were you/they diagnosed?: Feb. 25, 2011
- Age at diagnosis: 53
Re: Velcade maintenance therapy - how long?
Sorry for the misunderstanding. I meant no disrespect. Thank you for your reply.
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MikeJr - Who do you know with myeloma?: spouse
- When were you/they diagnosed?: 3/17
- Age at diagnosis: 42
Re: Velcade maintenance therapy - how long?
Well, thank you for your understanding now.
We are having the 65th cycle on Velcade of maintenance therapy for seven years from March 2011 after nurse reminds today.
She did the procedure of EGD with EUS and FNA on her pancreatic mass to find non-adenocarcinoma on December 22, 2010, then performed ERCP by inserting stent into bile duct with jaundice on December 29, 2010. She did the EGD find non-neuroendocrine on February 4, 2011, then performed ERCP by inserting another new stent into first stent that was crushed by tumor rapid growing and having jaundice again on March 15, 2011.
Due to the tumor being too big, her general surgeon was not able to perform the Whipple procedure on her pancreatic tumor, and find another tumor on pelvic. Finally, the oncologist and pathologist diagnosis my wife carried multiple myeloma on pancreas and pelvic, also called extramedullary plasmacytoma.
There was the 26th case on English speaking countries in Jiangsu, China, and the case of my wife is 27 and first case at her U.S. medical center. The patient's tumor on pancreas is 3 cm and treated by Velcade and dexamethasone then disappear, but patient died after one year fully remission without maintenance therapy under my reading and calling the hematology and oncologist in China. I did mention these issues to our oncologist here.
We are having the 65th cycle on Velcade of maintenance therapy for seven years from March 2011 after nurse reminds today.
She did the procedure of EGD with EUS and FNA on her pancreatic mass to find non-adenocarcinoma on December 22, 2010, then performed ERCP by inserting stent into bile duct with jaundice on December 29, 2010. She did the EGD find non-neuroendocrine on February 4, 2011, then performed ERCP by inserting another new stent into first stent that was crushed by tumor rapid growing and having jaundice again on March 15, 2011.
Due to the tumor being too big, her general surgeon was not able to perform the Whipple procedure on her pancreatic tumor, and find another tumor on pelvic. Finally, the oncologist and pathologist diagnosis my wife carried multiple myeloma on pancreas and pelvic, also called extramedullary plasmacytoma.
There was the 26th case on English speaking countries in Jiangsu, China, and the case of my wife is 27 and first case at her U.S. medical center. The patient's tumor on pancreas is 3 cm and treated by Velcade and dexamethasone then disappear, but patient died after one year fully remission without maintenance therapy under my reading and calling the hematology and oncologist in China. I did mention these issues to our oncologist here.
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chen5631867 - Name: George Chen
- Who do you know with myeloma?: My Spouse
- When were you/they diagnosed?: Feb. 25, 2011
- Age at diagnosis: 53
Re: Velcade maintenance therapy - how long?
Today, we do have a second shot of Velcade maintenance therapy in the 65th cycle, and take three week off.
Now I recalled she was admitted to hospital for emergency because was feeling extreme abdominal pains after these tumors crash her nerve system in March 2011. All doctors did not tell me how long she will be, and issue an letter to allow my sister-in-laws for getting an visa to USA from Taiwan.
More than a week, she was released after 1st cycle of Velcade, Revlimid, and dexamethasone, given acupuncture and herb tea for her edema on her feet, and was able to climb upstairs by herself. These results are really over expected by patient, doctors, and family, so that I am able to move into weeks, month, then years. Who say it is no curable? It is only treatable.
Now I recalled she was admitted to hospital for emergency because was feeling extreme abdominal pains after these tumors crash her nerve system in March 2011. All doctors did not tell me how long she will be, and issue an letter to allow my sister-in-laws for getting an visa to USA from Taiwan.
More than a week, she was released after 1st cycle of Velcade, Revlimid, and dexamethasone, given acupuncture and herb tea for her edema on her feet, and was able to climb upstairs by herself. These results are really over expected by patient, doctors, and family, so that I am able to move into weeks, month, then years. Who say it is no curable? It is only treatable.
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chen5631867 - Name: George Chen
- Who do you know with myeloma?: My Spouse
- When were you/they diagnosed?: Feb. 25, 2011
- Age at diagnosis: 53
Re: Velcade maintenance therapy - how long?
Wednesday morning, April 11, my wife suddenly asked the practical senior nurse of our oncologist finishes her infusion during clinical visiting after the last cycle of Velcade maintenance therapy on cycle 66 on this late April over seven years, then stop her treatment, because she told the nurse all of her lab show in normal ranges and without MGUS except blood sugar, but I did not think this good idea for a patient carrying multiple myeloma with pancreas and pelvic.
I did ask our oncologist have a break on her maintenance therapy, but the practical nurse did mention my wife wanted to stop her treatment after the 66th cycle of Velcade maintenance therapy. Our oncologist feel very Innocent under my wife's decision for her treatment being so successful, then ask her come back three months on the July after finishing her last cycle. I am really worry that if relapse, then it will be difficulty to have further treatment.
I did ask our oncologist have a break on her maintenance therapy, but the practical nurse did mention my wife wanted to stop her treatment after the 66th cycle of Velcade maintenance therapy. Our oncologist feel very Innocent under my wife's decision for her treatment being so successful, then ask her come back three months on the July after finishing her last cycle. I am really worry that if relapse, then it will be difficulty to have further treatment.
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chen5631867 - Name: George Chen
- Who do you know with myeloma?: My Spouse
- When were you/they diagnosed?: Feb. 25, 2011
- Age at diagnosis: 53
Re: Velcade maintenance therapy - how long?
On April 19, we had a clinical visit to family doctor, a schoolmate of mine who has worked as a surgeon in Taiwan (I finished initial studies in Taiwan and then further studies in the U.S.). He told my wife who should discuss the plan of stopping Velcade maintenance therapy with me before asking her oncologist.
Also, we attended a patient meeting on April 21 and I mentioned the case of multiple myeloma on the pancreas and pelvis. I was told the case is well beyond the speaker's topic, who did not have any suggestion.
Also, we attended a patient meeting on April 21 and I mentioned the case of multiple myeloma on the pancreas and pelvis. I was told the case is well beyond the speaker's topic, who did not have any suggestion.
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chen5631867 - Name: George Chen
- Who do you know with myeloma?: My Spouse
- When were you/they diagnosed?: Feb. 25, 2011
- Age at diagnosis: 53
Re: Velcade maintenance therapy - how long?
I had a chance to see Dr. Michaela Liedtke of Stanford speak o n "Myeloma Treatment over the Next 5 Years," and also speak with her about our case.
Well, she is a great speaker on her flash memory without any slide after finishing previous meeting. I did ask how we shall stop Velcade maintenance therapy under her criteria and algorithm to treat multiple myeloma patients, such as MRD negative, next generation sequencing, FISH tests, etc, but she just mentioned the cases of multiple myeloma on pancreas and pelvic are very unusual cases and have few comparisons, so that we shall discuss this matter with our oncologist.
Also, she response the treatments of CAR T-cell therapy differ about sharing the results of these data between in USA and China. First, all of us shall be very careful to cause serious cytokine storm response such as high fever, pneumonia. Second, we do much better in protection of privacy policy to sharing these data on public so that it will be the best to patients with their first priority in this country.
Well, she is a great speaker on her flash memory without any slide after finishing previous meeting. I did ask how we shall stop Velcade maintenance therapy under her criteria and algorithm to treat multiple myeloma patients, such as MRD negative, next generation sequencing, FISH tests, etc, but she just mentioned the cases of multiple myeloma on pancreas and pelvic are very unusual cases and have few comparisons, so that we shall discuss this matter with our oncologist.
Also, she response the treatments of CAR T-cell therapy differ about sharing the results of these data between in USA and China. First, all of us shall be very careful to cause serious cytokine storm response such as high fever, pneumonia. Second, we do much better in protection of privacy policy to sharing these data on public so that it will be the best to patients with their first priority in this country.
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chen5631867 - Name: George Chen
- Who do you know with myeloma?: My Spouse
- When were you/they diagnosed?: Feb. 25, 2011
- Age at diagnosis: 53
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