Please help, my mom diagnosed with multiple myeloma, Bone Marrow aspiration shows 18% plasma cells. Doctors are saying that they will begin with bortezomib follwed by ASCT after 4-6 months. Is it correct approach for the treatment, how risky is the ASCT for a patient, what are the risks involved and success rate.
To add on, all organs of my mom are doing well at this stage except a single lytic lesion in rib. Serum Calcium, Creatanine levels are within range. M Spike in Serum Protein Electrophoresis is 4.04 g/dl.
Forums
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ankitbhardwaj - Name: Ankit
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: Mar 2013
- Age at diagnosis: 54
Re: Best Treatment Approach for Newly Diagnosed
Hi There Ankit,
Sorry to hear about your Mom.
There is no one correct approach for this disease, as you will discover as you explore this disease further. If you are going to start treatment, there is a whole range of approaches ranging from only doing chemo treatment to chemo followed by ASCT and even other different transplant options. There are also many different opinions on chemo regimes that one can use, including the doses used with the chemo (it is unlikely that your Mom's chemo would only be on bortezomib (Velcade) and that is would probably be a combo of Velcade with Revlimid and Dex (VRD), or perhaps another combo of drugs with the Velcade. It really boils down to doing a lot of homework, talking to a specialist(s) that really lives and breaths this disease and sees MANY multiple myeloma patients a year, and choosing the right path that makes sense for your Mom and that you all feel comfortable with. Many oncologists out there don't see that many multiple myeloma patients every year and simply aren't up on all the latest options available to the multiple myeloma patient.
In any case, I would certainly recommend getting a second opinion from a multiple myeloma specialist at a completely different facility regarding the suggested course of treatment. If you haven't done so already, I would have another radiologist look at the xrays that showed the lytic lesion (assuming she only had Xrays done), as well as to confirm with a PET/CT, MRI or biopsy that the lytic lesion is truly there.
Also, has she had a FISH study and her cytogenetics analyzed (these look for chromosome abnormalities associated with the multiple myeloma)? These tests will also play into the course of treatment and her prognosis.
You may find this thread to be helpful in better understanding some of the options open to your Mom.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
Best of luck. Many, many folks with multiple myeloma are doing very well these days and are living quality, long lives with all the new treatment possibilities available these days.
Sorry to hear about your Mom.
There is no one correct approach for this disease, as you will discover as you explore this disease further. If you are going to start treatment, there is a whole range of approaches ranging from only doing chemo treatment to chemo followed by ASCT and even other different transplant options. There are also many different opinions on chemo regimes that one can use, including the doses used with the chemo (it is unlikely that your Mom's chemo would only be on bortezomib (Velcade) and that is would probably be a combo of Velcade with Revlimid and Dex (VRD), or perhaps another combo of drugs with the Velcade. It really boils down to doing a lot of homework, talking to a specialist(s) that really lives and breaths this disease and sees MANY multiple myeloma patients a year, and choosing the right path that makes sense for your Mom and that you all feel comfortable with. Many oncologists out there don't see that many multiple myeloma patients every year and simply aren't up on all the latest options available to the multiple myeloma patient.
In any case, I would certainly recommend getting a second opinion from a multiple myeloma specialist at a completely different facility regarding the suggested course of treatment. If you haven't done so already, I would have another radiologist look at the xrays that showed the lytic lesion (assuming she only had Xrays done), as well as to confirm with a PET/CT, MRI or biopsy that the lytic lesion is truly there.
Also, has she had a FISH study and her cytogenetics analyzed (these look for chromosome abnormalities associated with the multiple myeloma)? These tests will also play into the course of treatment and her prognosis.
You may find this thread to be helpful in better understanding some of the options open to your Mom.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
Best of luck. Many, many folks with multiple myeloma are doing very well these days and are living quality, long lives with all the new treatment possibilities available these days.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Best Treatment Approach for Newly Diagnosed
Many thanks for your prompt response, I am hoping my mom do well and I can be fortunate to get her company for a long time to come.
Can some one also advise me if it is wise to take Bortizomib right upfront as my doc has advised to start with Lenaledomide and Dex only for two months and later revisit and see if Bortizomib is required.
Can some one also advise me if it is wise to take Bortizomib right upfront as my doc has advised to start with Lenaledomide and Dex only for two months and later revisit and see if Bortizomib is required.
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ankitbhardwaj - Name: Ankit
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: Mar 2013
- Age at diagnosis: 54
Re: Best Treatment Approach for Newly Diagnosed
It may not be advisable AT ALL for your mom to begin with that nasty, PN-inducing drug Velcade. If she is deemed low-risk, then Revlimid plus dex alone may be more than sufficient as a starting point. That this doctor is adhering to a one-size fits all approach is disturbing. And simply advising a stem cell transplant without any discussion is just as disturbing. Stay away from this person. This person has no perspective at all and is dangerous. IMO.
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Anonymous
Re: Best Treatment Approach for Newly Diagnosed
Hi Ankitbhardwaj,
I'm so sorry to hear about your mom.
EJ's initial therapy was with Velcade and Dexamethasone prior to stem cell transplant. He had very little trouble with PN (only toward the end), and it resolved in about nine months after his last treatment. He went on to have a SCT and has been in VGPR for 21 months, with an M-spike that seems to fluxuate between 0 and .1.
From what I understand, there is some discussion about whether a two drug or a three drug combination is best for newly diagnosed patients. Have you asked your doctor why he thinks Revlimid/Dexamethasone is the best option? Also, if you decide to add Velcade to the mix, you may ask if he can administer it subcutaneously instead of as an IV. They have found this lessons the PN.
All the best to you and your mom.
Lyn
I'm so sorry to hear about your mom.
EJ's initial therapy was with Velcade and Dexamethasone prior to stem cell transplant. He had very little trouble with PN (only toward the end), and it resolved in about nine months after his last treatment. He went on to have a SCT and has been in VGPR for 21 months, with an M-spike that seems to fluxuate between 0 and .1.
From what I understand, there is some discussion about whether a two drug or a three drug combination is best for newly diagnosed patients. Have you asked your doctor why he thinks Revlimid/Dexamethasone is the best option? Also, if you decide to add Velcade to the mix, you may ask if he can administer it subcutaneously instead of as an IV. They have found this lessons the PN.
All the best to you and your mom.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Best Treatment Approach for Newly Diagnosed
The Velcade and dexamethasone recommendation is very reasonable. Monitor disease response with each cycle of therapy to see if a 3rd drug will need to be added. Consolidation of treatment with stem cell transplant is reasonable as well.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Best Treatment Approach for Newly Diagnosed
With respect to PN. It should be pointed out that most patients tolerate Velcade and are not victims of PN. I for one have never had any issues with PN and have been on Velcade since I was diagnosed in Feb 2009. The dosage changed from weekly to once every two weeks and originally it was intervenous but since January 2012 has been subcutaneous.
Ron
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Best Treatment Approach for Newly Diagnosed
I'd get a second opinion. It sounds as if your doctor is using what used to be the standard approach to treating patients.
I've had none of the CRAB symptoms but, because of creeping IgG and M-spike numbers in addition to high percentage of myeloma cells in the bone marrow, my doctor said it's a good idea to start treatment before myeloma could attack my bones. I've had one cycle of Velcade sub-q, with only two rounds of Cytoxan. Plus 3 days of 50mg of prednisone (every other day). My M-Spike has dropped from 4.14 to 1.42. IgG from 5330 to 1572. My FLC is now in the normal range. I had one round of Velcade, Cytoxan & prednisone in the 2nd cycle. I'll be getting 15mg Revlimid somewhere during the next cycle. This will replace the Cytoxan.
I've had no side-effects.
Even my doctor, Dr. Jagannath, was impressed with these results.
I don't see why your doctor would jump right to an ASCT so quickly.
I've had none of the CRAB symptoms but, because of creeping IgG and M-spike numbers in addition to high percentage of myeloma cells in the bone marrow, my doctor said it's a good idea to start treatment before myeloma could attack my bones. I've had one cycle of Velcade sub-q, with only two rounds of Cytoxan. Plus 3 days of 50mg of prednisone (every other day). My M-Spike has dropped from 4.14 to 1.42. IgG from 5330 to 1572. My FLC is now in the normal range. I had one round of Velcade, Cytoxan & prednisone in the 2nd cycle. I'll be getting 15mg Revlimid somewhere during the next cycle. This will replace the Cytoxan.
I've had no side-effects.
Even my doctor, Dr. Jagannath, was impressed with these results.
I don't see why your doctor would jump right to an ASCT so quickly.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: Best Treatment Approach for Newly Diagnosed
My mom has been started with Lenalidomide and Dexa right now. Can some one please advise what alternative therapies she can start along with the ongoing treatment so that once remission is achieved, it can be prolonged. I googl'ed a lot of things to find a few interesting therapies:
- Gerson Therapy
- Dr Gonzalez Therapy
- Energy Healing - http://thegeordiehealer.blogspot.in/2008/08/multiple-myeloma.html
- What about Spirulina tablets/powder - Is this useful?
Any comment or advise on these therapies?
- Gerson Therapy
- Dr Gonzalez Therapy
- Energy Healing - http://thegeordiehealer.blogspot.in/2008/08/multiple-myeloma.html
- What about Spirulina tablets/powder - Is this useful?
Any comment or advise on these therapies?
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ankitbhardwaj - Name: Ankit
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: Mar 2013
- Age at diagnosis: 54
Re: Best Treatment Approach for Newly Diagnosed
Hi Ankit,
I am glad to hear that your mother has started treatment. I would be interested to hear how the treatment goes. Perhaps you can post updates every once and a while?
You may have seen them already, but just in case, I thought I would point out that there have been a number of discussions already here in the forum about alternative / unconventional / integrative / holistic approaches to treating myeloma. Here are some discussions you may find useful:
https://myelomabeacon.org/forum/unconventional-methods-treating-multiple-myeloma-t1574.html
https://myelomabeacon.org/forum/conventional-cancer-treatment-vs-integrative-oncology-t1535.html
https://myelomabeacon.org/forum/alternative-therapy-treatments-multiple-myeloma-t22.html
https://myelomabeacon.org/forum/poly-mva-has-anyone-tried-this-t147.html
I hope your mother responds well to her treatment and that she doesn't experience many side effects.
I am glad to hear that your mother has started treatment. I would be interested to hear how the treatment goes. Perhaps you can post updates every once and a while?
You may have seen them already, but just in case, I thought I would point out that there have been a number of discussions already here in the forum about alternative / unconventional / integrative / holistic approaches to treating myeloma. Here are some discussions you may find useful:
https://myelomabeacon.org/forum/unconventional-methods-treating-multiple-myeloma-t1574.html
https://myelomabeacon.org/forum/conventional-cancer-treatment-vs-integrative-oncology-t1535.html
https://myelomabeacon.org/forum/alternative-therapy-treatments-multiple-myeloma-t22.html
https://myelomabeacon.org/forum/poly-mva-has-anyone-tried-this-t147.html
I hope your mother responds well to her treatment and that she doesn't experience many side effects.
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