Our Mayo Clinic psychiatrist mentioned most cancer patients have the treatment of maintenance chemotherapy in remission after five years, then these patients are able to finish the treatment in full recovery.
Is it true to multiple myeloma on pancreatic and pelvic (extramedullary plasmacytoma)?
She already has more than forty cycles of maintenance chemotherapy without stem cell transplant (SCT) by using Velcade around fifty five months. She keeps asking me when she does not need any treatment after almost all results of blood work and MRI show in normal range.
Any suggestions?
Forums
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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?
Good day, Chen:
Maintenance for 4 to 5 years is an area that there is no hard study data to go by. From reading reports in the Beacon, doctors seem to be moving in that direction, of continuous treatment until first relapse. If you think of it, the Velcade maintenance may very well be the reason the numbers have been so well for so long. If the accumulated side effects are starting to become an issue, that may be a reason for the doctor to change course.
I will give you two ideas, however.
First, ask your doctor what he feels about a Velcade holiday. How long of a holiday would be a judgment call. Clearly, your doctor would observe that there would be a risk of the numbers creeping up during the holiday, which would likely happen at some point anyway, even on the continued maintenance.
Second, ixazomib is the oral formulation of Velcade. That is in the pipeline for approval in the near future (4-6 months?). It is a reasonably close substitute. It has a lot lower side effect profile for neuropathy. It may cause more GI effects, but overall is reported to have lower side effects.
Good Luck.
Maintenance for 4 to 5 years is an area that there is no hard study data to go by. From reading reports in the Beacon, doctors seem to be moving in that direction, of continuous treatment until first relapse. If you think of it, the Velcade maintenance may very well be the reason the numbers have been so well for so long. If the accumulated side effects are starting to become an issue, that may be a reason for the doctor to change course.
I will give you two ideas, however.
First, ask your doctor what he feels about a Velcade holiday. How long of a holiday would be a judgment call. Clearly, your doctor would observe that there would be a risk of the numbers creeping up during the holiday, which would likely happen at some point anyway, even on the continued maintenance.
Second, ixazomib is the oral formulation of Velcade. That is in the pipeline for approval in the near future (4-6 months?). It is a reasonably close substitute. It has a lot lower side effect profile for neuropathy. It may cause more GI effects, but overall is reported to have lower side effects.
Good Luck.
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JPC - Name: JPC
Re: Velcade maintenance therapy - how long?
Hi Chen,
JPC makes some good points.
I think your mom is extremely fortunate that she has done so well given she was dealing with extramedullary plasmacytomas. The development of extramedullary plasmacytomas is generally associated with a poor prognosis. I therefore would guess that her doctor may be a bit reluctant to change course given that your mom is still in remission with this difficult version of multiple myeloma. But that again is just a guess on my part.
Is she experiencing worsening side effects from the Velcade, or is she just tired of having to go in for injections ... or both?
JPC makes some good points.
I think your mom is extremely fortunate that she has done so well given she was dealing with extramedullary plasmacytomas. The development of extramedullary plasmacytomas is generally associated with a poor prognosis. I therefore would guess that her doctor may be a bit reluctant to change course given that your mom is still in remission with this difficult version of multiple myeloma. But that again is just a guess on my part.
Is she experiencing worsening side effects from the Velcade, or is she just tired of having to go in for injections ... or both?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Velcade maintenance therapy - how long?
Well, thank all of you for your wonderful suggestions.
She only have very little side effects of numbness on her tongue from the beginning of her treatments. We will have a Princess Cruise to Mexico on San Francisco for a week or longer on early October this year so that she will have a longer break of Velcade maintenance if her doctor allows.
Millions of thanks to all of you, Beacon.
She only have very little side effects of numbness on her tongue from the beginning of her treatments. We will have a Princess Cruise to Mexico on San Francisco for a week or longer on early October this year so that she will have a longer break of Velcade maintenance if her doctor allows.
Millions of thanks to all of you, Beacon.
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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?
Well, we do have to visit cancer center at Stanford Hospital today in the morning.
She not only have very little side effects of numb, but also feel numbness and burning above abdomen last month, and have the 43rd cycle of Velcade maintenance therapy at Stanford. After finishing the cycle treatment, we will have another doctor visit on late October. Nurses tell us we may ask doctor have a little long break if we do not have before.
Thanks to all of you, Beacon.
She not only have very little side effects of numb, but also feel numbness and burning above abdomen last month, and have the 43rd cycle of Velcade maintenance therapy at Stanford. After finishing the cycle treatment, we will have another doctor visit on late October. Nurses tell us we may ask doctor have a little long break if we do not have before.
Thanks to all of you, Beacon.
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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?
She had extramedullary plasmacytomas on both her pancreas and pelvis. They were not able to perform surgery at Stanford Medical Center. Treated by VRD in high doses more than six months so that these tumors have disappeared after having MRIs in August 2011
Without having any SCT, in remission because of weak genes on multiple myeloma. She has taken subcutaneous Velcade shots with two weeks on and three off by performing maintenance therapy.
In beginning, she only feel numbs on tongue almost over passing four years, but has extreme pains from abdomen to below neck with having hydrocodones too. Before she finished over forty cycles of the maintenance therapy, we ask nurses and physician to have a break for this treatment, but they told us we shall have to tell our doctors for next clinical visit on late October after having Mexican Princess Cruise this week.
Shall we have to change another kind of medicines for the maintenance therapy or stop treatment? Any suggestions?
Without having any SCT, in remission because of weak genes on multiple myeloma. She has taken subcutaneous Velcade shots with two weeks on and three off by performing maintenance therapy.
In beginning, she only feel numbs on tongue almost over passing four years, but has extreme pains from abdomen to below neck with having hydrocodones too. Before she finished over forty cycles of the maintenance therapy, we ask nurses and physician to have a break for this treatment, but they told us we shall have to tell our doctors for next clinical visit on late October after having Mexican Princess Cruise this week.
Shall we have to change another kind of medicines for the maintenance therapy or stop treatment? Any suggestions?
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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?
Hello, Chen:
One more brief idea for you. First, I am not the doctor, who very well may have a very good reason for his/her approach that I have no idea of. I do hear that some patients do go over to Velcade maintenance if they cannot tolerate the Rev, and vice versa. If you go over to Rev from Velcade, the PN may stop advancing, or get better (but also it might not help), but your mom would be exposed to the list of Rev side effects, and if you do, it is not certain if the Rev would keep down the #'s as effectively as Velcade did. However, having troublesome side effects is the main reason that doctors make changes like these. Good luck
One more brief idea for you. First, I am not the doctor, who very well may have a very good reason for his/her approach that I have no idea of. I do hear that some patients do go over to Velcade maintenance if they cannot tolerate the Rev, and vice versa. If you go over to Rev from Velcade, the PN may stop advancing, or get better (but also it might not help), but your mom would be exposed to the list of Rev side effects, and if you do, it is not certain if the Rev would keep down the #'s as effectively as Velcade did. However, having troublesome side effects is the main reason that doctors make changes like these. Good luck
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JPC - Name: JPC
Re: Velcade maintenance therapy - how long?
Our cruise is moving to LA after finishing a Santa Barbara tour on the third day in our vacation. She has lots foods and sleeps well too without being feeling too much pain because of the boat shaking.
People tell me our lifes are short so that we need to enjoy our lives on the cruise.
People tell me our lifes are short so that we need to enjoy our lives on the cruise.
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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?
Well, we finished the wonderful cruise along the west coast last week, and will have another 15-day Hawaii cruise on Nov. 25, 2015. Today, we have a clinical doctors' visit at the Stanford Cancer Center that they decide to refer her to GI specialist for extreme stomach pains.
She will have another cycle of maintenance therapy after blood tests such as CBC, liver function, renal function were normal without CRAB except for high blood glucose. Then we have another month off, and these doctors will discuss the next treatments after we come back from Hawaii.
She will have another cycle of maintenance therapy after blood tests such as CBC, liver function, renal function were normal without CRAB except for high blood glucose. Then we have another month off, and these doctors will discuss the next treatments after we come back from Hawaii.
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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?
She feels less pain after having acupuncture at our local clinical office in Northern California. We will have another appointment for acupuncture next Friday, and release her pains more.
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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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