Hi Multibilly!
First, I should say, I am not a real touch feely warm and fuzzy person. I have compassion and I deeply feel for others, but this disease requires being able to as they say in football 'suck it up" You gotta leave your emotions on the field and focus on the next play.
You can't let the last play (diagnosis) emotionally impact your next one,(therapy)
AND you need to know what you are 'sucking up" as a patient.
Hope you are a football fan..lol...
All of which is to say, I will give you data, that is pertinent but you will have to choose based on your own personal needs/beliefs. There are various opinons in multiple myeloma therapy on how to treat initially, there is consensus on some things and at the same time there is lots that is debatable on initial therapy, some of which is cost. Being 'high risk' is another.. Do you know if you are 'high risk" The data will enable you to make good choices and weigh what you are told...but the final decision is yours. If you have challenges understanding the data...ASK questions.
You write:
"Not really. I am just beginning to explore what the potential implications of the peripheral neuropathy are and that is currently my biggest concern going into initial treatment."
OK, in terms of QOL, peripheral neuropathy(PN) means you can not feel your fingertips or toes. Which means, when cooking or trying to button a shirt, you will get burned and not feel it and lack the ability to button/zipper clothing, put on socks and shoes. It also makes walking isdifficult if it is your toes, since you use then to push off from. You can reduce that impact by taking L-carnitine. It starts out as tingling and if you feel it, that is the beginning, it will/can get worse but L-carnitine ameliorates it a lot. While you didn't mention age PN is more likely if you are 50 or older. Bottomline, you don't want it, if you can avoid it. carfilzomib (Krypolis) does vs. bortezomib (Velcade)
While your doc says most patients don't suffer from it, there is no way to distinguish if you WILL be one of the patients who do. And many if not most patients on bortezomib DO. Age is also a big factor older patients those over 50.typically DO get PN..and those under 50 can as well, based on the MOA of the drug. So, you want to avoid that if you can.
You also write:
"Note that my first doc said I should just monitor the disease at this point and not do any treatment and that it was better to wait."
If as you mentioned you have one of the CRAB...no you cannot wait. I too, only had the B in CRAB, and was completly asymptomatic...which is what you indicate you have...bone lesions. While there are lots of various opinions regarding multiple myeloma..having one of the CRAB is NOT one of them. You have the B..that is considered major organ damage. Waiting is not an option.
"I am definitely getting the impression from this forum and my second doc that one should begin treatment based on my current lab results and having lytic lesion"
You are correct. One of the things about myeloma is that it comprises only 1% of all cancers. So when you see an oncologist, who is not a multiple myeloma expert, he may see only one multiple myeloma patient a year. Which is why it is critically important to choose an onclologist/hematologist who is a multiple myeloma expert.
"Well, the point I was trying to make is that I meet one of the CRAB criteria, and that combined with my initial paraprotein level (1.67) and clonal plasma level (11%), makes me technically "Symptomatic" Stage 1. "
Actually, those numbers are diagnostic for multiple myeloma. Again, remember the average oncologist may only see one person with multiple myeloma a year.
Your sodium number is likely not an issue, I could be wrong, but your elevated TOTAL protein was the red flag.
"He was smart enough to then order a follow-up serum protein electrophoresis test and then detected what he called a "beta spike when analyzing my globulin results".
Absolutely! dead on!! You have an excellent clinician that discerned the very vital point that lead you to where you are. He/She is a good doc. Even if he/she is not an oncologist. He/she is a person you should continue to see for all other issues.
"Both of my hematologists say I was extremely lucky that my general physician caught this problem based on the subtleties in my initial bloodwork."
I completely agree, that is how my diagnosis came about as well. So pat yourself on the back for
having picked a great doc!! I am completely beholden to my internist for the same reason. I trust
her medical judgment and expertise based on this as well.
The only caution, I give you is about the sct...and you have heard from several of us here about that. You have an oncologist. The question is do you have an oncologist that treats primarily multiple myeloma patients? If not, he is recommending 'standard of care' he only sees one person like you a year...SO...you want to see an expert who treats primarily multiple myeloma.
Your doc is not wrong...the problem is he is not current!!
When it comes to expertise for multiple myeloma therapy.
KNOW your choices!!
JMHO
suzierose
Forums
Re: Looking for Feedback on Recommended First Round Treatmen
MultiBilly,
My experience with VRD has been very positive. I was diagnosed with stage two light chain multiple myeloma. What that means is that I never had a measurable M spike and my disease is tracked through the serum light chain assay. After 3 cycles of VRD my light chain readings were all in the normal range. After a year my oncologist began to dial back the treatment. He dropped Revlimid back in june this year and changed my Velcade to a subcutaneous shot back in January. I am down from 40 mg of dex each week to 20 mg once every 2 weeks when I get the Velcade. I also get aredia once every 16 weeks down from once a cycle when I first started. I have never had any issues with PN.
When I say I have a good quality of life,I mean that but for the time in treatment and some minor side effects from the Dex, I lead a normal life. I have not missed work (other than a few days due to contracting sinus infections and a bout with meningitis). In total less than 10 days in nearly 4 years. Plus I am an avid cyclist and will have put in over 4,000 miles on my bike this year and over 18,000 since i was diagnosed. i also try to compete with younger riders. Never had an SCT.
There are many others that have taken a similar route with similar results.
This disease is still not curable but treatment with novel agents has changed everything. Ten years ago an SCT was standard and realistically the only method available that could lead to a temporary remission. Back then the remissions didn't last long and SCT is and continues to be a risky proceedure since all of you bone marrow is basically wiped out and has to be regrown. It is not an out patient proceedure and takes a significant period of time to recover from. Then you will still likely be on RD or VD or even RVD for a number of years as maintenance therapy.
My oncoligist is one that believes in today's environment with patients such as myself the risk does not justify an elusive benefit. The convincing point being the need for continual maintenance therapy with the same novel agents that I am taking. In essence I am on maintenance therapy but skipped the SCT.
Ron
My experience with VRD has been very positive. I was diagnosed with stage two light chain multiple myeloma. What that means is that I never had a measurable M spike and my disease is tracked through the serum light chain assay. After 3 cycles of VRD my light chain readings were all in the normal range. After a year my oncologist began to dial back the treatment. He dropped Revlimid back in june this year and changed my Velcade to a subcutaneous shot back in January. I am down from 40 mg of dex each week to 20 mg once every 2 weeks when I get the Velcade. I also get aredia once every 16 weeks down from once a cycle when I first started. I have never had any issues with PN.
When I say I have a good quality of life,I mean that but for the time in treatment and some minor side effects from the Dex, I lead a normal life. I have not missed work (other than a few days due to contracting sinus infections and a bout with meningitis). In total less than 10 days in nearly 4 years. Plus I am an avid cyclist and will have put in over 4,000 miles on my bike this year and over 18,000 since i was diagnosed. i also try to compete with younger riders. Never had an SCT.
There are many others that have taken a similar route with similar results.
This disease is still not curable but treatment with novel agents has changed everything. Ten years ago an SCT was standard and realistically the only method available that could lead to a temporary remission. Back then the remissions didn't last long and SCT is and continues to be a risky proceedure since all of you bone marrow is basically wiped out and has to be regrown. It is not an out patient proceedure and takes a significant period of time to recover from. Then you will still likely be on RD or VD or even RVD for a number of years as maintenance therapy.
My oncoligist is one that believes in today's environment with patients such as myself the risk does not justify an elusive benefit. The convincing point being the need for continual maintenance therapy with the same novel agents that I am taking. In essence I am on maintenance therapy but skipped the SCT.
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: Looking for Feedback on Recommended First Round Treatmen
MultiBilly,
I pretty much side with what Ron, Stan, and suzierose have said. I only had the A in CRAB when diagnosed, but had a general practitioner that was smart/cautious enough to send me to a hematologist/oncologist. That doctor only saw a few multiple myeloma patients a year and was not up-to-date on the most current options. I received a second opinion from a leading multiple myeloma specialist and was able to get into the CRD trial for newly diagnosed patients. Consequently, I chose the delayed SCT route. I am two cycles away from the end of the trial and have reached sCR, including molecular level response. Given results thus far, and considering responses from RVD which is similar to CRD, I'm hoping to have several more years before considering a SCT. My stem cells were harvested about 15 months ago, and the hospital indicated they could be stored at least 10-12 years (if I don't need them until then, I'm hoping other treatments will be around so I can forego the SCT again).
suzierose mentioned the phase II trial for newly diagnosed multiple myeloma patients that does 8 cycles of CRD followed by 1 year of Revlimid maintenance. The doctors in my trial are also recommending continuing Revlimid maintenance, though it's not actually part of the trial. Recent studies have shown the continued low-dose Revlimid can significantly improve progression free response and possibly even improve overall survival. If this could be an option for you, you should consider it. I am probably going to opt for the continued Revlimid maintenance.
I also agree with suzirose's comments regarding QOL. The SCT had significant impact on QOL for six months to a year, and many people then have continuing issues for years thereafter. The side effects from the CRD have been fairly minimal, particularly when compared to what others endure with other treatments that are available. I have had to make very few concessions (in part due to treatment, in part due to my own stubbornness) with respect to QOL. I would say it's within 90% of what it was prior to multiple myeloma, and in some cases I'm doing better because I'm more driven to maintain a healthier lifestyle.
The bottom line for me was finding the best balance between QOL and an effective treatment that would give me a chance for CR and a prolonged response. A few years ago, there weren't many options beyond a SCT, but with the newer agents available now, there are. Good luck with whatever you decide.
I pretty much side with what Ron, Stan, and suzierose have said. I only had the A in CRAB when diagnosed, but had a general practitioner that was smart/cautious enough to send me to a hematologist/oncologist. That doctor only saw a few multiple myeloma patients a year and was not up-to-date on the most current options. I received a second opinion from a leading multiple myeloma specialist and was able to get into the CRD trial for newly diagnosed patients. Consequently, I chose the delayed SCT route. I am two cycles away from the end of the trial and have reached sCR, including molecular level response. Given results thus far, and considering responses from RVD which is similar to CRD, I'm hoping to have several more years before considering a SCT. My stem cells were harvested about 15 months ago, and the hospital indicated they could be stored at least 10-12 years (if I don't need them until then, I'm hoping other treatments will be around so I can forego the SCT again).
suzierose mentioned the phase II trial for newly diagnosed multiple myeloma patients that does 8 cycles of CRD followed by 1 year of Revlimid maintenance. The doctors in my trial are also recommending continuing Revlimid maintenance, though it's not actually part of the trial. Recent studies have shown the continued low-dose Revlimid can significantly improve progression free response and possibly even improve overall survival. If this could be an option for you, you should consider it. I am probably going to opt for the continued Revlimid maintenance.
I also agree with suzirose's comments regarding QOL. The SCT had significant impact on QOL for six months to a year, and many people then have continuing issues for years thereafter. The side effects from the CRD have been fairly minimal, particularly when compared to what others endure with other treatments that are available. I have had to make very few concessions (in part due to treatment, in part due to my own stubbornness) with respect to QOL. I would say it's within 90% of what it was prior to multiple myeloma, and in some cases I'm doing better because I'm more driven to maintain a healthier lifestyle.
The bottom line for me was finding the best balance between QOL and an effective treatment that would give me a chance for CR and a prolonged response. A few years ago, there weren't many options beyond a SCT, but with the newer agents available now, there are. Good luck with whatever you decide.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Looking for Feedback on Recommended First Round Treatmen
SCTs came into vogue decades ago - well before development of today's modern agents like Rev, Vel, and Caf - with the explicit goal of deepening responses in patients, who back then rarely achived CRs, much less sCRs. That made sense.
But today, many patients can achieve a CR or sCR with novel reagents alone.
Point 1: So why would anyone normally consider an (autologous) SCT today if you are already in or close to CR or sCR, or may achieve either with further use of novel reagents?
Point 2: SCT may sound like a high-tech, super-charged treatment - but it is anything but:
It is lethal chemotherapy that would kill you without the stem cell rescue. So to be fair, it should really be called something like LC-SCR. That would be a fair representation, because SCT is blatant misnomer - although yes, informed patients on this site do understand this.
Point 2: I finding it disturbing and disingenous to hear that - as in my case, my stem cell collection has provided me with enough cells for 3-5 transplants. Whoopee! What seems clear for many patients is that even one transplant can be incredibly debilitating, such that the marrow never recovers completely. So the idea of ravaging the marrow repeatedly with a procedure that may have NO benefit is quite perplexing. YES: for some patients, it is probably is a vital option, and more generally, an ALLOGENIC stem cell transplant can be curative and certainly is worth considering - even today. So I would consider an allogenic transplant down the road.
But autologous SCT as a standard and default up-front procedure? Please. Enough is enough. That era is over. And IMHO it exploits new patients who are already frightened, ill-informed, and beholden to whatever their doctor recommends. Don't get sucked in without doing proper research, assessing YOUR own clinical profile, and getting a second opinion if necessary.
But today, many patients can achieve a CR or sCR with novel reagents alone.
Point 1: So why would anyone normally consider an (autologous) SCT today if you are already in or close to CR or sCR, or may achieve either with further use of novel reagents?
Point 2: SCT may sound like a high-tech, super-charged treatment - but it is anything but:
It is lethal chemotherapy that would kill you without the stem cell rescue. So to be fair, it should really be called something like LC-SCR. That would be a fair representation, because SCT is blatant misnomer - although yes, informed patients on this site do understand this.
Point 2: I finding it disturbing and disingenous to hear that - as in my case, my stem cell collection has provided me with enough cells for 3-5 transplants. Whoopee! What seems clear for many patients is that even one transplant can be incredibly debilitating, such that the marrow never recovers completely. So the idea of ravaging the marrow repeatedly with a procedure that may have NO benefit is quite perplexing. YES: for some patients, it is probably is a vital option, and more generally, an ALLOGENIC stem cell transplant can be curative and certainly is worth considering - even today. So I would consider an allogenic transplant down the road.
But autologous SCT as a standard and default up-front procedure? Please. Enough is enough. That era is over. And IMHO it exploits new patients who are already frightened, ill-informed, and beholden to whatever their doctor recommends. Don't get sucked in without doing proper research, assessing YOUR own clinical profile, and getting a second opinion if necessary.
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Dan D
Re: Looking for Feedback on Recommended First Round Treatmen
wow. reading the forum lately seems like it's a veritable hotbed of anti-sct sentiment. AndI say sentiment because it seems so emotional and adamant . Are there any readers out there who feel differently. What about high risk?
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Msmulberry - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 67
Re: Looking for Feedback on Recommended First Round Treatmen
Dear Msmulberry,
Therapy and the choices for newly diagnosed multiple myeloma (NDMM) patients has evolved.
Respectfully, many of us are not anti-sct. We are anti-HDT. High doses of lethally toxic chemotherapy(HDT). That is the therapy. It preceeds sct, which is not therapy, but salvage. Point of fact, all of us, Ron,Kevin, StanW and myself have had our cells harvested, if the day should come where it could be our 'salvage' choice, we have the stem cells to use. Those were not emotional choices, rather they are scientifically based on clinical evidence from trials.
With regards to 'high risk' that patient population has dismal outcomes with HDT that is used prior to them re-infusing your own stem cells, so that you do not die, as your bone marrow has been obliterated and can no longer produce the life sustaining blood force of our bodies, i.e. stem cells.
I think you will find that regardless of what choices a patient makes, we are all respectfull of that.
Yet, there are better choices and all patients should be aware of that and choose wisely based on their personal beliefs.
Additionally, there are numerous threads in the forum on HD-SCT where those who have made that choice are very happy.
While multiple myeloma is a rare cancer and comprises only 1% of all cancers it comprises 50% of cancer patients who receive HD-SCT
Some of us simply do not believe in enduring the long term effects of that HDT therapy, (such as leukemia) particularly as there is also a 50% failure rate and CR is not achieved while CR is achieved WITHOUT HD-SCT therapy today with far less toxic effects, when the new agents are used.
Multibilly, is looking for options as a NDMM patient...please feel free to share yours, we do and will respect them.
Therapy and the choices for newly diagnosed multiple myeloma (NDMM) patients has evolved.
Respectfully, many of us are not anti-sct. We are anti-HDT. High doses of lethally toxic chemotherapy(HDT). That is the therapy. It preceeds sct, which is not therapy, but salvage. Point of fact, all of us, Ron,Kevin, StanW and myself have had our cells harvested, if the day should come where it could be our 'salvage' choice, we have the stem cells to use. Those were not emotional choices, rather they are scientifically based on clinical evidence from trials.
With regards to 'high risk' that patient population has dismal outcomes with HDT that is used prior to them re-infusing your own stem cells, so that you do not die, as your bone marrow has been obliterated and can no longer produce the life sustaining blood force of our bodies, i.e. stem cells.
I think you will find that regardless of what choices a patient makes, we are all respectfull of that.
Yet, there are better choices and all patients should be aware of that and choose wisely based on their personal beliefs.
Additionally, there are numerous threads in the forum on HD-SCT where those who have made that choice are very happy.
While multiple myeloma is a rare cancer and comprises only 1% of all cancers it comprises 50% of cancer patients who receive HD-SCT
Some of us simply do not believe in enduring the long term effects of that HDT therapy, (such as leukemia) particularly as there is also a 50% failure rate and CR is not achieved while CR is achieved WITHOUT HD-SCT therapy today with far less toxic effects, when the new agents are used.
Multibilly, is looking for options as a NDMM patient...please feel free to share yours, we do and will respect them.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Looking for Feedback on Recommended First Round Treatmen
I fully understand that SCT follows hd chemo and that the point is to replace what has been destroyed. I'm somewhat mystified that anyone would not understand this.
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Msmulberry - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 67
Re: Looking for Feedback on Recommended First Round Treatmen
Hi Msmulberry,
You would be surprised at how many patients do not understand this..they hear transplant, and think they are getting something new&improved, not their own cells. I was one of those.
It was only after asking questions that I learned diffferently.
I suspect, it is because of how the option is presented. The physician typically recommends SCT not HDT. Even though the HDT is the therapy, what the patient hears is transplant and they think that is what they are opting for. Because the word transplant means to them, they are going to get new cells. Not that it is the HDT that necessitates the sct with their own diseased cells.
After the SCT transplant was recommended, I asked my doc, well how does me getting back my own cells change the disease, THAT was when I learned, it didn't! But rather, it was the HDT that was the treatment. I was incredulous. "WHAT? ... you are going to give me highly toxic lethal doses, oblieterate my bone marrow and immune system then HOPE you have killed more multiple myeloma cells than normal cells?" I was smdh.
So, I feel it is important to make that distinction to all patients.
Whatever choice a patient makes, is fine, but they should know and understand their options.
Please share yours on HD-SCT with Multibilly...he will likely appreciate hearing from those who did opt for SCT and how it turned out.
You would be surprised at how many patients do not understand this..they hear transplant, and think they are getting something new&improved, not their own cells. I was one of those.
It was only after asking questions that I learned diffferently.
I suspect, it is because of how the option is presented. The physician typically recommends SCT not HDT. Even though the HDT is the therapy, what the patient hears is transplant and they think that is what they are opting for. Because the word transplant means to them, they are going to get new cells. Not that it is the HDT that necessitates the sct with their own diseased cells.
After the SCT transplant was recommended, I asked my doc, well how does me getting back my own cells change the disease, THAT was when I learned, it didn't! But rather, it was the HDT that was the treatment. I was incredulous. "WHAT? ... you are going to give me highly toxic lethal doses, oblieterate my bone marrow and immune system then HOPE you have killed more multiple myeloma cells than normal cells?" I was smdh.
So, I feel it is important to make that distinction to all patients.
Whatever choice a patient makes, is fine, but they should know and understand their options.
Please share yours on HD-SCT with Multibilly...he will likely appreciate hearing from those who did opt for SCT and how it turned out.
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Looking for Feedback on Recommended First Round Treatmen
Regarding which 2 drugs to start with. Many will advocate using Velcade / dexamethasone if adverse cytogenetics are present or if renal failure is a problem. Otherwise Revlimid and dexamethasone are perfectly reasonable and convenient as both are pill form.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Looking for Feedback on Recommended First Round Treatmen
Dr. Jason Valent wrote:
> Regarding which 2 drugs to start with. Many will advocate using Velcade /
> dexamethasone if adverse cytogenetics are present or if renal failure is a
> problem. Otherwise Revlimid and dexamethasone are perfectly reasonable and
> convenient as both are pill form.
Thanks. I should have also mentioned that my cytogenetics are all good and that no clonal abnormalities were found in my chromosome test, and no adverse prognostic indicators were found in my FISH test (yipee!)
> Regarding which 2 drugs to start with. Many will advocate using Velcade /
> dexamethasone if adverse cytogenetics are present or if renal failure is a
> problem. Otherwise Revlimid and dexamethasone are perfectly reasonable and
> convenient as both are pill form.
Thanks. I should have also mentioned that my cytogenetics are all good and that no clonal abnormalities were found in my chromosome test, and no adverse prognostic indicators were found in my FISH test (yipee!)
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012