Hello,
I am writing on behalf of my sister, a newly diagnosed multiple myeloma patient living in Anchorage and a 47-year-old mom. Her doctor there, who is consulting with a myeloma specialist in Seattle, recommended that she immediately start treatment with Velcade, Revlimid, and dexamethasone.
She respects her doctor and we've heard good things about the Seattle specialist, but she and her husband had hoped to have a little bit more time to mull treatment options and pursue promising trials.
Would starting the Velcade, Revlimid and dex treatment preclude her from participating in other promising trials or treatments she might learn about?
She and her husband are willing to do whatever it takes to get her the most promising treatment possible, including moving the family.
The urgency, she was told, is because there is concern the disease could soon damage her kidneys – apparently the numbers (light chains?) were high.
Her plasma was at 60 percent. No sign of bone damage, genetic tests show what her doctor called "standard" multiple myeloma (not "high risk").
She and her husband want to get all the information they can, and thought they'd have time to explore options, including relocating to Seattle or Mayo or University of Wisconsin - Madison (where I and many other family members live, so lots of family support.) They'd go anywhere in the country to seek her best hope for successful treatment.
Not sure how quickly she could be seen by her current Seattle specialist or others there, and she wants to be in Anchorage for her son's first day of kindergarten next week, but would she be taking a risk to try to put off the recommended drug cocktail treatment for a week or two, when maybe she and her husband could fly down to Seattle for a consult?
Or is this really a matter of such urgency that they should start treatment today?
And, again, if they do that, could they be shutting the doors to promising treatments or trials?
Thank you for any advice you can share.
Forums
Re: Will starting initial treatment preclude other options?
Hi Shawn,
Sorry to hear about your sister's diagnosis. It's great that you are helping her out.
Starting treatment now would preclude your sister from participating in clinical trials intended for newly diagnosed multiple myeloma patients. Patients are really only considered "newly diagnosed" if they have not yet been treated.
Likewise, your sister would not be eligible in the next month or two for other trials intended for previously treated myeloma patients, as those trials typically require patients to have had at least one prior therapy, and to have stopped responding to that therapy (or be experiencing a relapse).
All that having been said, Revlimid, Velcade, and dexamethasone (RVD) is one of the more potent treatment regimens out there. More importantly, there really isn't much evidence at this point in time that it really matters whether myeloma patients get treatment regimens in a specific sequence. There is certainly no reason your sister couldn't be treated with RVD now, and later be treated, for example, with Darzalex, Pomalyst, and dexamethasone.
As to the urgency of your sister's situation, I would say that is something best judged by her doctors. Your sister should be honest with them about wanting to explore other options, and ask them whether it's really advisable – given her specific situation – to delay treatment for a month or two.
There is a good chance the doctors will be hesitant to delay treatment, but that is because they want to avoid a situation where your sister's kidneys or bones experience serious damage that could be difficult to reverse. She only has one set of kidneys, and you can't go down to Walmart and get a new pair. Also, you don't have to do much reading here in the forum before you find lots of postings about bone pain and how negative an impact it can have on a person's quality of life.
Good luck, and please encourage your sister to join us here in the forum. I think she'll find it very helpful.
P.S. - ClinicalTrials.Gov is the standard resource for searching for clinical trials for any disease. The advanced search function on the site makes it easy to restrict the search by disease (just type in "myeloma" as the "condition"), location, etc. One useful trick: If you're searching for trials for newly diagnosed patients, just go to the advanced search page,
https://clinicaltrials.gov/ct2/search/advanced
and type in "newly myeloma" as the "condition", and hit the submit button.
Sorry to hear about your sister's diagnosis. It's great that you are helping her out.
Starting treatment now would preclude your sister from participating in clinical trials intended for newly diagnosed multiple myeloma patients. Patients are really only considered "newly diagnosed" if they have not yet been treated.
Likewise, your sister would not be eligible in the next month or two for other trials intended for previously treated myeloma patients, as those trials typically require patients to have had at least one prior therapy, and to have stopped responding to that therapy (or be experiencing a relapse).
All that having been said, Revlimid, Velcade, and dexamethasone (RVD) is one of the more potent treatment regimens out there. More importantly, there really isn't much evidence at this point in time that it really matters whether myeloma patients get treatment regimens in a specific sequence. There is certainly no reason your sister couldn't be treated with RVD now, and later be treated, for example, with Darzalex, Pomalyst, and dexamethasone.
As to the urgency of your sister's situation, I would say that is something best judged by her doctors. Your sister should be honest with them about wanting to explore other options, and ask them whether it's really advisable – given her specific situation – to delay treatment for a month or two.
There is a good chance the doctors will be hesitant to delay treatment, but that is because they want to avoid a situation where your sister's kidneys or bones experience serious damage that could be difficult to reverse. She only has one set of kidneys, and you can't go down to Walmart and get a new pair. Also, you don't have to do much reading here in the forum before you find lots of postings about bone pain and how negative an impact it can have on a person's quality of life.
Good luck, and please encourage your sister to join us here in the forum. I think she'll find it very helpful.
P.S. - ClinicalTrials.Gov is the standard resource for searching for clinical trials for any disease. The advanced search function on the site makes it easy to restrict the search by disease (just type in "myeloma" as the "condition"), location, etc. One useful trick: If you're searching for trials for newly diagnosed patients, just go to the advanced search page,
https://clinicaltrials.gov/ct2/search/advanced
and type in "newly myeloma" as the "condition", and hit the submit button.
-
Jonah
Re: Will starting initial treatment preclude other options?
Hello Shawn:
I think that you received very good input from Jonah. Also, when this is new, you wish you had all the information so as to make the best possible decision, but multiple myeloma is somewhat complex, and it is hard to come up to speed quickly.
You have touched on a question that I have posted on a couple of times in the past, so I will add a little bit to Jonah's fine response. Revlimid, Velcade, and dexamethasone is arguably the most potent "approved" regimen in the US (as Jonah mentioned). It has something like a 95% overall response rate. Complete response rates were quite good, in the 30% or 40% range. In the U.S., however, there is something called "off label" approvals. Several posters have reported that some hospitals, where they can get insurance approvals, have gone towards an even more potent regimen, with a more modern, newer proteasome inhibitor, switching Kyprolis for Velcade, known as KRD (Kyprolis, Revlimid, and dexamethasone), as initial treatment. When included with an autologous stem cell transplant, KRD consolidation / maintenance, recent data has shown that it has much higher rate of stringent complete responses, in the range of double the RVD rate.
In the case of my wife, she turned symptomatic in August / September of 2014. We investigated and could not get on a clinical trial for Kyprolis. We did not know that much, but had heard good things about it back then. Unfortunately, the multiple myeloma was starting to move quickly, and we could not afford extra time, and went with the RVD, initially, even though we were thinking that KRD might be better. We got close to a CR, but not quite there, that is after initial induction and an autologous stem cell transplant (ASCT). Our doctor at that point proposed the possibility of KRD as consolidation after the stem cell transplant. In my wife's case, it was justifiable in that she had the t(4,14) abnormality. With the KRD, she did, thankfully reach a stringent complete response (sCR) on KRD consolidation.
This is just a snapshot of an example of the application of the newer treatments. If you could reach stringent complete response and minimal residual disease negative (aka MRD -) with the RVD, it would be better to keep the Kyprolis in your back pocket for down the road. If you did not reach that response, you could discuss at that time with the doctor of options to get there.
FYI, getting to MRD- gives you the best chance of a prolonged first remission.
Good luck to you and your sister.
I think that you received very good input from Jonah. Also, when this is new, you wish you had all the information so as to make the best possible decision, but multiple myeloma is somewhat complex, and it is hard to come up to speed quickly.
You have touched on a question that I have posted on a couple of times in the past, so I will add a little bit to Jonah's fine response. Revlimid, Velcade, and dexamethasone is arguably the most potent "approved" regimen in the US (as Jonah mentioned). It has something like a 95% overall response rate. Complete response rates were quite good, in the 30% or 40% range. In the U.S., however, there is something called "off label" approvals. Several posters have reported that some hospitals, where they can get insurance approvals, have gone towards an even more potent regimen, with a more modern, newer proteasome inhibitor, switching Kyprolis for Velcade, known as KRD (Kyprolis, Revlimid, and dexamethasone), as initial treatment. When included with an autologous stem cell transplant, KRD consolidation / maintenance, recent data has shown that it has much higher rate of stringent complete responses, in the range of double the RVD rate.
In the case of my wife, she turned symptomatic in August / September of 2014. We investigated and could not get on a clinical trial for Kyprolis. We did not know that much, but had heard good things about it back then. Unfortunately, the multiple myeloma was starting to move quickly, and we could not afford extra time, and went with the RVD, initially, even though we were thinking that KRD might be better. We got close to a CR, but not quite there, that is after initial induction and an autologous stem cell transplant (ASCT). Our doctor at that point proposed the possibility of KRD as consolidation after the stem cell transplant. In my wife's case, it was justifiable in that she had the t(4,14) abnormality. With the KRD, she did, thankfully reach a stringent complete response (sCR) on KRD consolidation.
This is just a snapshot of an example of the application of the newer treatments. If you could reach stringent complete response and minimal residual disease negative (aka MRD -) with the RVD, it would be better to keep the Kyprolis in your back pocket for down the road. If you did not reach that response, you could discuss at that time with the doctor of options to get there.
FYI, getting to MRD- gives you the best chance of a prolonged first remission.
Good luck to you and your sister.
-
JPC - Name: JPC
Re: Will starting initial treatment preclude other options?
Hi Shawn,
I was hoping that no one would second guess the treatment recommendation of your sister's myeloma specialist. There are several well respected myeloma specialists in Seattle, so I'm sure your sister is getting treatment advice from someone with orders of magnitude more experience and knowledge about multiple myeloma than any of us here.
But, given what's been posted in this thread, you are probably wondering if the advice your sister has been given is good. So let me put your mind at ease while also putting things into some perspective for others here in the forum.
For over five years now, myeloma specialists have been conducting clinical trials to test the safety and efficacy of Kyprolis, Revlimid, and dexamethasone (KRd) to treat newly diagnosed multiple myeloma. The early studies of the regimen, combined with other Kyprolis studies, have long suggested that Kyprolis usually gets deeper responses in patients than Velcade.
This is widely known, and it's the reason that few myeloma specialists have been surprised that the sort of treatment that JPC discusses – KRd induction therapy, a stem cell transplant, and KRd consolidation and maintenance – yields deep responses. This approach is just a logical extension of what already has been seen in earlier, published results for Velcade, Revlimid, and dexamethasone from studies done, for example, at Emory University or in France.
Although it's been widely known that KRd is effective as an upfront therapy, it's also been widely known that Kyprolis tends to be a riskier drug to use than Velcade, due to the cardiac- and liver-related side effects associated with Kyprolis. There also are data suggesting that Kyprolis is more likely to cause a serious, usually fatal, post-transplant complication known as thrombotic microangiopathy (TMA).
For these reasons, few myeloma treatment centers in the U.S. extensively use KRd as a treatment for newly diagnosed myeloma patients. Kyprolis is used so infrequently in newly diagnosed myeloma patients that its sales in the U.S. are even less than the sales of Pomalyst, a drug specifically targeted at relapsed and late-stage myeloma patients. (And Pomalyst has been approved in the U.S. for a shorter time than Kyprolis!)
The myeloma specialists or centers in the U.S. who ARE really pushing the use of KRd as upfront therapy are specialists or centers who have been closely linked to the company that sells Kyprolis: Amgen (originally Onyx). I am speaking, in particular, of Dr. Landgren at Sloan-Kettering (which is where JPC's wife is being treated) and Dr. Jakubowiak at the University of Chicago. Both of these specialists have built their careers on trials testing Kyprolis as a myeloma therapy.
It is important to understand that the limited use of KRd in most U.S. treatment centers is NOT because myeloma specialists do not know about the regimen and research results related to it. Instead, it is because the risk-reward tradeoff associated with the regimen, and the fact that not using KRd upfront does NOT mean you cannot use it later, and there is no evidence that using the regimen later will lead to shorter OVERALL survival.
To see that this is true, just turn to the July 2016 update to the treatment guidelines for newly diagnosed multiple myeloma from the Mayo Clinic myeloma group (link to guidelines). Those guidelines recommend KRd induction therapy for only the small group of myeloma patients who
(a) are not standard risk or intermediate risk, and
(b) are eligible for transplantation.
And, for this small group, the Mayo group recommends just 4 cycles of KRd upfront, and does not push KRd as consolidation therapy, saying VRd is equally a good choice:
Again, these guidelines were updated just last month (July 2016), with more than enough time to take into account recent research findings. Moreover, the guidelines are from the treatment center with the largest group of myeloma specialists in the U.S., and several of Mayo's specialists have been involved in key trials testing Kyprolis.
Finally, the fact that VRd (or RVd) is the most common treatment regimen for newly diagnosed myeloma in the U.S. has nothing to do with its FDA approval status. The regimen is no more officially approved as a treatment for newly diagnosed myeloma than KRd is. Both VRd and KRd are off-label treatments for newly diagnosed myeloma. Neither is approved by the FDA – or any other regulatory authority – to treat newly diagnosed myeloma.
Bottom line: RVd / VRd is a perfectly acceptable upfront treatment for your sister.
I'm sorry anything said earlier in this thread may have led you to doubt your sister's specialist's recommendation.
Good luck!
I was hoping that no one would second guess the treatment recommendation of your sister's myeloma specialist. There are several well respected myeloma specialists in Seattle, so I'm sure your sister is getting treatment advice from someone with orders of magnitude more experience and knowledge about multiple myeloma than any of us here.
But, given what's been posted in this thread, you are probably wondering if the advice your sister has been given is good. So let me put your mind at ease while also putting things into some perspective for others here in the forum.
For over five years now, myeloma specialists have been conducting clinical trials to test the safety and efficacy of Kyprolis, Revlimid, and dexamethasone (KRd) to treat newly diagnosed multiple myeloma. The early studies of the regimen, combined with other Kyprolis studies, have long suggested that Kyprolis usually gets deeper responses in patients than Velcade.
This is widely known, and it's the reason that few myeloma specialists have been surprised that the sort of treatment that JPC discusses – KRd induction therapy, a stem cell transplant, and KRd consolidation and maintenance – yields deep responses. This approach is just a logical extension of what already has been seen in earlier, published results for Velcade, Revlimid, and dexamethasone from studies done, for example, at Emory University or in France.
Although it's been widely known that KRd is effective as an upfront therapy, it's also been widely known that Kyprolis tends to be a riskier drug to use than Velcade, due to the cardiac- and liver-related side effects associated with Kyprolis. There also are data suggesting that Kyprolis is more likely to cause a serious, usually fatal, post-transplant complication known as thrombotic microangiopathy (TMA).
For these reasons, few myeloma treatment centers in the U.S. extensively use KRd as a treatment for newly diagnosed myeloma patients. Kyprolis is used so infrequently in newly diagnosed myeloma patients that its sales in the U.S. are even less than the sales of Pomalyst, a drug specifically targeted at relapsed and late-stage myeloma patients. (And Pomalyst has been approved in the U.S. for a shorter time than Kyprolis!)
The myeloma specialists or centers in the U.S. who ARE really pushing the use of KRd as upfront therapy are specialists or centers who have been closely linked to the company that sells Kyprolis: Amgen (originally Onyx). I am speaking, in particular, of Dr. Landgren at Sloan-Kettering (which is where JPC's wife is being treated) and Dr. Jakubowiak at the University of Chicago. Both of these specialists have built their careers on trials testing Kyprolis as a myeloma therapy.
It is important to understand that the limited use of KRd in most U.S. treatment centers is NOT because myeloma specialists do not know about the regimen and research results related to it. Instead, it is because the risk-reward tradeoff associated with the regimen, and the fact that not using KRd upfront does NOT mean you cannot use it later, and there is no evidence that using the regimen later will lead to shorter OVERALL survival.
To see that this is true, just turn to the July 2016 update to the treatment guidelines for newly diagnosed multiple myeloma from the Mayo Clinic myeloma group (link to guidelines). Those guidelines recommend KRd induction therapy for only the small group of myeloma patients who
(a) are not standard risk or intermediate risk, and
(b) are eligible for transplantation.
And, for this small group, the Mayo group recommends just 4 cycles of KRd upfront, and does not push KRd as consolidation therapy, saying VRd is equally a good choice:
Again, these guidelines were updated just last month (July 2016), with more than enough time to take into account recent research findings. Moreover, the guidelines are from the treatment center with the largest group of myeloma specialists in the U.S., and several of Mayo's specialists have been involved in key trials testing Kyprolis.
Finally, the fact that VRd (or RVd) is the most common treatment regimen for newly diagnosed myeloma in the U.S. has nothing to do with its FDA approval status. The regimen is no more officially approved as a treatment for newly diagnosed myeloma than KRd is. Both VRd and KRd are off-label treatments for newly diagnosed myeloma. Neither is approved by the FDA – or any other regulatory authority – to treat newly diagnosed myeloma.
Bottom line: RVd / VRd is a perfectly acceptable upfront treatment for your sister.
I'm sorry anything said earlier in this thread may have led you to doubt your sister's specialist's recommendation.
Good luck!
-
Jonah
Re: Will starting initial treatment preclude other options?
Quick addition to this thread. When we were faced with the multiple myeloma diagnosis, I wanted to learn as much as I could as fast as I could. I appreciated very much any new information that I was able to get or that people explained to me, and so I do try to inform new patients of available options. So Shawn, I am not a doctor, I don't make any type of specific recommendations. I have no reason to question your doctor, I did not do that, and I see you have a myeloma specialist on your team, and I think that its a good thing. Actually, I do not understand the thought process of "withholding" information (actually in this case, criticizing it).
It appears that Jonah and I have a difference of philosophy. As mentioned, Jonah, I certainly did not question a doctor. I am not one, I am not sure whether or not you are one. Maybe you are, I do not know, but I would think probably not as most posters mention that. Your "concern" (for which you apologized) is that I "suggested" that the doctor was wrong.
Here is where I disagree strongly. For ANY medical condition, particularly the onset of multiple myeloma, I believe a patient should ALWAYS be questioning, am I at the right hospital, am I with the right doctor, am I receiving the right treatment at the optimal schedule, what do I do next? If I did not do that for any of my loved ones, I would not be happy with myself.
So Jonah, I believe pointing out options is a GOOD thing. That's just me. I do not apologize for it. I try to be careful not to argue, specifically, which is the best (quite frankly, in your prior post, I think you did that much more than I did). New treatments are new options. Although I think I understand where you might be coming from, I think its more correct to share information on the latest available treatments to the newly diagnosed patients, and think it would be a disservice to do otherwise.
It appears that Jonah and I have a difference of philosophy. As mentioned, Jonah, I certainly did not question a doctor. I am not one, I am not sure whether or not you are one. Maybe you are, I do not know, but I would think probably not as most posters mention that. Your "concern" (for which you apologized) is that I "suggested" that the doctor was wrong.
Here is where I disagree strongly. For ANY medical condition, particularly the onset of multiple myeloma, I believe a patient should ALWAYS be questioning, am I at the right hospital, am I with the right doctor, am I receiving the right treatment at the optimal schedule, what do I do next? If I did not do that for any of my loved ones, I would not be happy with myself.
So Jonah, I believe pointing out options is a GOOD thing. That's just me. I do not apologize for it. I try to be careful not to argue, specifically, which is the best (quite frankly, in your prior post, I think you did that much more than I did). New treatments are new options. Although I think I understand where you might be coming from, I think its more correct to share information on the latest available treatments to the newly diagnosed patients, and think it would be a disservice to do otherwise.
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JPC - Name: JPC
Re: Will starting initial treatment preclude other options?
Wow, thank you so much for these thoughtful and thorough responses.
I should clarify one thing: my sister does not yet have a specialist working directly with her in Anchorage. Her doctor told her he had consulted with a specialist in Seattle, but she has been unable to talk directly with that specialist, and would very much like to.
So that's why I reached out to all of you.
She is trying to make appointments with a specialist in Seattle, and another at the University of Wisconsin - Madison, where I and other family live, so she has terrific family support. And once she finds a specialist who can oversee her care in Anchorage, and work with her doctor there, I'm hopeful she will feel much better about all this.
As you know, it's scary and overwhelming to get this kind of diagnosis, and to be told that you should the very next day undertake an intense drug regimen, without at least feeling that you were able to ask a few questions and get a second opinion and/or confirmation of the advice. I think she and her husband are wise, too, to want to be sure that embarking on this regimen doesn't preclude any other promising therapy.
Thanks again for your help.
I should clarify one thing: my sister does not yet have a specialist working directly with her in Anchorage. Her doctor told her he had consulted with a specialist in Seattle, but she has been unable to talk directly with that specialist, and would very much like to.
So that's why I reached out to all of you.
She is trying to make appointments with a specialist in Seattle, and another at the University of Wisconsin - Madison, where I and other family live, so she has terrific family support. And once she finds a specialist who can oversee her care in Anchorage, and work with her doctor there, I'm hopeful she will feel much better about all this.
As you know, it's scary and overwhelming to get this kind of diagnosis, and to be told that you should the very next day undertake an intense drug regimen, without at least feeling that you were able to ask a few questions and get a second opinion and/or confirmation of the advice. I think she and her husband are wise, too, to want to be sure that embarking on this regimen doesn't preclude any other promising therapy.
Thanks again for your help.
Re: Will starting initial treatment preclude other options?
Good luck, Shawn. In myeloma we have these "controversies", as the experts call them. You will probably see a couple more as you learn more. The most important thing is doing the best for our loved ones. Good luck to you and your sister, sincerely. Regards,
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JPC - Name: JPC
Re: Will starting initial treatment preclude other options?
Hello Shawn,
I'm sure your sister will be fine. As I said earlier, if your sister starts treatment with Revlimid, Velcade, and dexamethasone (RVd), she'll be getting a treatment that is widely regarded as appropriate for newly diagnosed multiple myeloma. I honestly do not think any other treatment option available to her right now will give her an overall survival benefit vis-a-vis RVd.
Hello JPC,
I am sorry we have to disagree, but I continue to feel your first post in this thread was inappropriate. I probably would not have said anything about this if this were the first time this has happened. But it's not.
In her original posting, Shawn did not ask for advice about treatment regimens. She asked whether starting treatment now with RVd would preclude other treatment options.
Just as importantly, Shawn and her family are at a point right now where they need both reliable information AND a reassurance that they are under the care of knowledgeable physicians (assuming that is the case).
Finally, Shawn's sister is (indirectly) getting treatment advice from a myeloma specialist in Seattle, and the specialist is recommending a treatment regimen that is widely accepted as appropriate – if not optimal – for newly diagnosed patients.
Given those facts, I'm afraid I can't describe it as anything but presumptuous and insensitive of you to call into question the treatment advice Shawn's sister has received.
Shawn and her family do not need to feel right now that the medical advice they are receiving is misguided. There also is absolutely no basis for questioning the quality of the advice they've received.
More importantly, as I described at length in my earlier posting, the information you provided about RVd and KRd was at best misleading, and could just as well be described as biased and inaccurate.
I have no desire to be in conflict with anyone here in the forum. I do feel, however, that what is posted in the forum should be reliable, and it should not cause people unnecessary emotional distress. That's why I reluctantly decided to disrupt the normally harmonious atmosphere here – an atmosphere I highly value, and which I hope will prevail again soon.
Take care,
Jonah
I'm sure your sister will be fine. As I said earlier, if your sister starts treatment with Revlimid, Velcade, and dexamethasone (RVd), she'll be getting a treatment that is widely regarded as appropriate for newly diagnosed multiple myeloma. I honestly do not think any other treatment option available to her right now will give her an overall survival benefit vis-a-vis RVd.
Hello JPC,
I am sorry we have to disagree, but I continue to feel your first post in this thread was inappropriate. I probably would not have said anything about this if this were the first time this has happened. But it's not.
In her original posting, Shawn did not ask for advice about treatment regimens. She asked whether starting treatment now with RVd would preclude other treatment options.
Just as importantly, Shawn and her family are at a point right now where they need both reliable information AND a reassurance that they are under the care of knowledgeable physicians (assuming that is the case).
Finally, Shawn's sister is (indirectly) getting treatment advice from a myeloma specialist in Seattle, and the specialist is recommending a treatment regimen that is widely accepted as appropriate – if not optimal – for newly diagnosed patients.
Given those facts, I'm afraid I can't describe it as anything but presumptuous and insensitive of you to call into question the treatment advice Shawn's sister has received.
Shawn and her family do not need to feel right now that the medical advice they are receiving is misguided. There also is absolutely no basis for questioning the quality of the advice they've received.
More importantly, as I described at length in my earlier posting, the information you provided about RVd and KRd was at best misleading, and could just as well be described as biased and inaccurate.
I have no desire to be in conflict with anyone here in the forum. I do feel, however, that what is posted in the forum should be reliable, and it should not cause people unnecessary emotional distress. That's why I reluctantly decided to disrupt the normally harmonious atmosphere here – an atmosphere I highly value, and which I hope will prevail again soon.
Take care,
Jonah
-
Jonah
Re: Will starting initial treatment preclude other options?
I'm about the same age and profile as your sister and started Revlimid, Velcade, and dexamethasone (RVD) back in June. Within 2 rounds (6 weeks), my numbers were well within the "normal" range, and I'm meeting Friday with the stem cell transplant specialist to see if I need a transplant.
I did underestimate the side effects a little - mainly fatigue and some gastrointestinal (GI) issues. But I've been working full time for over a month and otherwise feel great. I think everyone's response is a little different.
Good luck to your sister.
I did underestimate the side effects a little - mainly fatigue and some gastrointestinal (GI) issues. But I've been working full time for over a month and otherwise feel great. I think everyone's response is a little different.
Good luck to your sister.
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Will starting initial treatment preclude other options?
Most definitely yes.
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
13 posts
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