I was diagnosed Aug. 2012 had went on a large dose of chemo for 2 months which put me into remission. I then went to Mayo for my stem cell transplant (using my own cells) this only kept me into remission for 4 months. After this I was put on Pomalyst for 4 months.
During this 4 months they only tested my lab each month. Even though the IgG level was very high they turned their head to that and stated that my other labs looked good. Well, after the four months of that and getting me ready for a donor stem cell transplant they found after my bone marrow biopsy that I was full blown multiple myeloma.
Now they have started me on carfilzomib [Kyprolis]. My oncologist has stated in his progress note that he does not thing that anything will put me into remission or even partial remission now and gave me a poor prognosis. My question is, should I be looking for a different oncologist as there have been prior issues with this oncologist as far as not listening to me and now I am paralyzed from my waist down d/t a tumor on my back and found this out when I was admitted to the emergency room. The above prognosis that he gave he did not share this with myself or my family that was with me, I read this on the online portal in his progress note.
I am not ready to die as I am only 49 and still have the will to fight but I fear that my oncologist has written me off.
Thank you so much.
Forums
Re: Good treatment turned poor or need a new oncologist
May I suggest Univ. Arkansas Myeloma Institute in LIttle Rock. They helped my brother and if we had known would have had my father go there. I am being treated by the preminent expert Dr. B at UAMS. Good Luck!
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KWV
Re: Good treatment turned poor or need a new oncologist
I was thinking about MD Anderson in Texas. Does anyone know anything about this facility? I just want the best place.
Re: Good treatment turned poor or need a new oncologist
Sorry to hear about the situation you're in Kinickia.
It is always a good idea to get a second opinion. Just be sure you get a second opinion from a myeloma specialist, preferably a myeloma specialist who is really up to date on all the latest treatment options.
Is the oncologist you've mentioned your local oncologist, or someone at Mayo?
I ask because Mayo does have a number of well known and well respected myeloma specialists, although most of them are at their Minnesota and Arizona locations.
MD Anderson would be a good choice for a second opinion, because they also have a good number of myeloma specialists. Dr. Orlowski speaks regularly at conferences and is involved in many clinical trials, but there are several other myeloma specialists there on staff as well.
UAMS/Arkansas treats a lot of myeloma patients each year, maybe even the most of any center in America. Dr. Barlogie there is the best known of the specialists, but there are others on staff who also are very knowledgeable and experienced.
Dana-Farber in Boston is another center you might consider, if you are willing to travel a bit. It sounds like you may be in the midwest.
I shouldn't forget the Beacon's two sponsors, Sloan Kettering in New York City and the John Theurer Center in New Jersey, which also have some highly respected specialists on staff (Dr. Giralt at Sloan Kettering, and Dr. Siegel at the John Theurer Center, for example).
Perhaps we could help you more if you could tell us more when you were diagnosed, and when you received the various treatments you've received. It isn't completely clear to me from what you have posted.
It is always a good idea to get a second opinion. Just be sure you get a second opinion from a myeloma specialist, preferably a myeloma specialist who is really up to date on all the latest treatment options.
Is the oncologist you've mentioned your local oncologist, or someone at Mayo?
I ask because Mayo does have a number of well known and well respected myeloma specialists, although most of them are at their Minnesota and Arizona locations.
MD Anderson would be a good choice for a second opinion, because they also have a good number of myeloma specialists. Dr. Orlowski speaks regularly at conferences and is involved in many clinical trials, but there are several other myeloma specialists there on staff as well.
UAMS/Arkansas treats a lot of myeloma patients each year, maybe even the most of any center in America. Dr. Barlogie there is the best known of the specialists, but there are others on staff who also are very knowledgeable and experienced.
Dana-Farber in Boston is another center you might consider, if you are willing to travel a bit. It sounds like you may be in the midwest.
I shouldn't forget the Beacon's two sponsors, Sloan Kettering in New York City and the John Theurer Center in New Jersey, which also have some highly respected specialists on staff (Dr. Giralt at Sloan Kettering, and Dr. Siegel at the John Theurer Center, for example).
Perhaps we could help you more if you could tell us more when you were diagnosed, and when you received the various treatments you've received. It isn't completely clear to me from what you have posted.
Re: Good treatment turned poor or need a new oncologist
I was diagnosed July 31, 2012. They started me on intensive chemo treatment for 2 months, 4 days in the hospital. After this I went into remission. Left for Mayo after this and had a stem cell transplant using my own cells. Did great for 4 months but them came out of remission.
The reason that I did not go back to Mayo is because when I went for my check up after coming out of remission the doctor that did my transplant did not know who I was and forgot that she did the transplant. She had nothing ready or did not read the records prior to my arrival for my appointment.
The physician here in my hometown and also the physician at Mayo started me on Pomalyst and during this time he only would look at my labs, no bone marrow biopsy. He would say, your labs look good but my IgG level was always out of control so he constantly would rerun this lab test frequently. I had no bone marrow biopsies during the 4 months of being on this medication to actually see if it was working which was concerning to me. Right at the the beginning of this new drug I had had severe back pain and my doctor ignored my complaint until I was admitted to the ER because I could not urinate or hardly walk. Come to find out this was one of the tumors that is full of plasma cells that is in the soft tissue. The only thing that my oncologist could say was "I am sorry", (basically I am sorry for not listening).
So, I go 4 months on Pomalyst without any bone marrow biopsies, everything is ready for my transplant (donor) and waiting for me to get my bone marrow biopsy prior to me being admitted in Omaha, NE for this transplant. Come to find out the Pomalyst did not do anything for my myeloma, I was full blown like I was when I was first diagnosed. So now my transplant is on hold until they can get me into remission.
My oncologist here in Lincoln got the order from the transplant physician to put me on carfilzomib [Kyprolis], a new drug that has just came out and is also still in studies. I have just started on this. I have access to my oncologist's records and he has stated that he is doubtful that anything will put me in remission or complete remission and that my progress was poor. This oncologist did not say this to my sister and I the day that I had my appointment. But when talking to my transplant doctor in Omaha she has not stated this, she stated that we still have a few more options.
I am feeling like I have no trust in my oncologist anymore as I feel that he has just thrown his arms up and also that he doesn't know enough about this disease also I don't think that he talks with my transplant doctor enough on treatment and that the communication is poor.
I am only 49 years old and not ready to give up and refuse to give up because my oncologist does not know what else to do or just doesn't listen. I want to continue to fight but I want a doctor that is going to fight right by my side and get me the transplant that I need. My donor is waiting.
The reason that I did not go back to Mayo is because when I went for my check up after coming out of remission the doctor that did my transplant did not know who I was and forgot that she did the transplant. She had nothing ready or did not read the records prior to my arrival for my appointment.
The physician here in my hometown and also the physician at Mayo started me on Pomalyst and during this time he only would look at my labs, no bone marrow biopsy. He would say, your labs look good but my IgG level was always out of control so he constantly would rerun this lab test frequently. I had no bone marrow biopsies during the 4 months of being on this medication to actually see if it was working which was concerning to me. Right at the the beginning of this new drug I had had severe back pain and my doctor ignored my complaint until I was admitted to the ER because I could not urinate or hardly walk. Come to find out this was one of the tumors that is full of plasma cells that is in the soft tissue. The only thing that my oncologist could say was "I am sorry", (basically I am sorry for not listening).
So, I go 4 months on Pomalyst without any bone marrow biopsies, everything is ready for my transplant (donor) and waiting for me to get my bone marrow biopsy prior to me being admitted in Omaha, NE for this transplant. Come to find out the Pomalyst did not do anything for my myeloma, I was full blown like I was when I was first diagnosed. So now my transplant is on hold until they can get me into remission.
My oncologist here in Lincoln got the order from the transplant physician to put me on carfilzomib [Kyprolis], a new drug that has just came out and is also still in studies. I have just started on this. I have access to my oncologist's records and he has stated that he is doubtful that anything will put me in remission or complete remission and that my progress was poor. This oncologist did not say this to my sister and I the day that I had my appointment. But when talking to my transplant doctor in Omaha she has not stated this, she stated that we still have a few more options.
I am feeling like I have no trust in my oncologist anymore as I feel that he has just thrown his arms up and also that he doesn't know enough about this disease also I don't think that he talks with my transplant doctor enough on treatment and that the communication is poor.
I am only 49 years old and not ready to give up and refuse to give up because my oncologist does not know what else to do or just doesn't listen. I want to continue to fight but I want a doctor that is going to fight right by my side and get me the transplant that I need. My donor is waiting.
Re: Good treatment turned poor or need a new oncologist
i have found that teaching hospitals where research on cancer is being done is your best option. i was found to have multiple myeloma in 2002 and my ocon. told me that my best chances were to go to the university of md. greenebaum cancer center. these ocon not only treat cancer they also do research and are fully aware of your bios.blood and the other trappings that go along with it.these ocons aren't in it for the "bucks". "my thoughts" this all came from the ocon who had her own cancer center at her hospitaland diagnosed me
good luck.
marty
good luck.
marty
Re: Good treatment turned poor or need a new oncologist
Hello again, and thanks for the additional information.
I'm going to try to summarize what you've been through so far to help me understand it and also perhaps help everyone else here understand.
Here are the key points from what you've told us so far:
Diagnosed July 2012, age 49
Intensive chemo (what treatment?) (2 months?) -> complete response?
Auto stem cell transplant carried out -> what response?
(Any maintenance therapy?)
Relapse after 4 months
Pomalyst (4 months) -> what response?
(Donor found for allo transplant, but not yet carried out)
Extramedullary plasma tumor found
Kyprolis started (just recently)
Can you help us answer some of the questions about your treatment and its outcomes, as I've described above. For example:
What was your initial therapy, which you described as "intensive chemo"? Was it Revlimid, Velcade and dexamethasone?
Also, did this really last for just 2 months? And when you say you went into remission after this, does it mean you achieved a complete response?
And is it correct that you didn't have any maintenance therapy after the stem cell transplant? Some people start taking Revlimid after their stem cell transplant.
Finally, what sort of response did you get with the Pomalyst treatment? Did your mspike go down at all and if so how much?
Sorry to ask all these questions. I'm just trying to fill out the picture so we can help you as much as possible.
Right now, I'm thinking that your doctor may want to consider treating you with more than just Kyprolis to get the best possible response so that you can do your donor transplant. But that would depend a bit on what you had as your first therapy before your stem cell transplant.
I definitely don't think you or your doctors should be throwing in the towel. You still have options.
I'm going to try to summarize what you've been through so far to help me understand it and also perhaps help everyone else here understand.
Here are the key points from what you've told us so far:
Diagnosed July 2012, age 49
Intensive chemo (what treatment?) (2 months?) -> complete response?
Auto stem cell transplant carried out -> what response?
(Any maintenance therapy?)
Relapse after 4 months
Pomalyst (4 months) -> what response?
(Donor found for allo transplant, but not yet carried out)
Extramedullary plasma tumor found
Kyprolis started (just recently)
Can you help us answer some of the questions about your treatment and its outcomes, as I've described above. For example:
What was your initial therapy, which you described as "intensive chemo"? Was it Revlimid, Velcade and dexamethasone?
Also, did this really last for just 2 months? And when you say you went into remission after this, does it mean you achieved a complete response?
And is it correct that you didn't have any maintenance therapy after the stem cell transplant? Some people start taking Revlimid after their stem cell transplant.
Finally, what sort of response did you get with the Pomalyst treatment? Did your mspike go down at all and if so how much?
Sorry to ask all these questions. I'm just trying to fill out the picture so we can help you as much as possible.
Right now, I'm thinking that your doctor may want to consider treating you with more than just Kyprolis to get the best possible response so that you can do your donor transplant. But that would depend a bit on what you had as your first therapy before your stem cell transplant.
I definitely don't think you or your doctors should be throwing in the towel. You still have options.
Re: Good treatment turned poor or need a new oncologist
I cannot remember what drugs were used at the beginning to get me into complete response/remission prior to my transplant (my own cells). I do know there were about 6 bags total hanging but a couple of them were just IV fluids like lactated ringers to help flush it through.
Yes, I was on a maintenance dose after my transplant which was Velcade every other week, sub q injection. I was in remission after my first transplant but not sure if it was complete as my doctor at Mayo did not check the M spike. Remission only lasted "4" months. March 2013 is when we found out that I was no longer in remission anymore by them doing a bone marrow biopsy.
They put me on Pomalyst after we found out I was no longer in remission and was on this drug for 4 months, Just found out as of August 2, 2013 that the Pomalyst did not touch it and I just kept getting worse instead of better. Now, on new drug carfilzomib [Kyprolis] and they are not giving me anything else with it.
Does this help? If additional information needed please let me know.
Yes, I was on a maintenance dose after my transplant which was Velcade every other week, sub q injection. I was in remission after my first transplant but not sure if it was complete as my doctor at Mayo did not check the M spike. Remission only lasted "4" months. March 2013 is when we found out that I was no longer in remission anymore by them doing a bone marrow biopsy.
They put me on Pomalyst after we found out I was no longer in remission and was on this drug for 4 months, Just found out as of August 2, 2013 that the Pomalyst did not touch it and I just kept getting worse instead of better. Now, on new drug carfilzomib [Kyprolis] and they are not giving me anything else with it.
Does this help? If additional information needed please let me know.
Re: Good treatment turned poor or need a new oncologist
Thanks for the additional information, kinickia.
It's really hard to think about what you should do next without knowing more about what your initial treatment was. Can you find out by calling your oncologist or the cancer center, or by reviewing your records?
Also, how many months did the initial treatment last? Was it just two months, like you said? That seems short.
Usually, after you're diagnosed, you'll get several months of initial treatment. This may just be drugs that you can take at home, like Revlimid and dexamethasone. Or it may be Velcade, which needs to be injected, with dexamethasone. Or it may be a combination of those drugs, or some other combination.
Then, not long before your stem cell transplant, your stem cells will be collected, and just a few days before you transplant, you'll be given a high dose of melphalan by infusion.
What we need to know is what you were treated with right after you were diagnosed, and for how many months you received that treatment.
It's really hard to think about what you should do next without knowing more about what your initial treatment was. Can you find out by calling your oncologist or the cancer center, or by reviewing your records?
Also, how many months did the initial treatment last? Was it just two months, like you said? That seems short.
Usually, after you're diagnosed, you'll get several months of initial treatment. This may just be drugs that you can take at home, like Revlimid and dexamethasone. Or it may be Velcade, which needs to be injected, with dexamethasone. Or it may be a combination of those drugs, or some other combination.
Then, not long before your stem cell transplant, your stem cells will be collected, and just a few days before you transplant, you'll be given a high dose of melphalan by infusion.
What we need to know is what you were treated with right after you were diagnosed, and for how many months you received that treatment.
Re: Good treatment turned poor or need a new oncologist
Hello Kinickia,
It is important to have trust in your oncologist. You might sit down with him/her and let them know your concerns and see if they can address them to your satisfaction. I agree with the other Beacon members that seeking a second opinion can be valuable and cant hurt anything. I suggest that you consider a research study as there are powerful drugs available only through a study that could change the course of your disease. Whatever you do..it sounds like you need to have a backup plan if the carfilzomib doesnt work. I would say to never give up.
There is hope. Perhaps a new drug or combination of drugs will regain control over your disease.
It is important to have trust in your oncologist. You might sit down with him/her and let them know your concerns and see if they can address them to your satisfaction. I agree with the other Beacon members that seeking a second opinion can be valuable and cant hurt anything. I suggest that you consider a research study as there are powerful drugs available only through a study that could change the course of your disease. Whatever you do..it sounds like you need to have a backup plan if the carfilzomib doesnt work. I would say to never give up.
There is hope. Perhaps a new drug or combination of drugs will regain control over your disease.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
11 posts
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