Hello all. What a wonderful place to discover!
It took me three doctor visits to go from thinking I had strained muscles to receiving this call: "Your labs came back and the doctor wants you to see oncologist." In fairness to my dear doctor, he was horrified to learn about her call.
I only have my diagnosis, know nothing more. I am scheduled to see a hematology oncologist in two days. I will be seen at West MIchigan Cancer Center in Kalamazoo. I don't think this doctor is a myeloma specialist, but I don't know how to find one near me in southwest Michigan.
Would be so grateful for any information anyone might have. Thank you all!
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6 posts
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julies - Name: julies
- Who do you know with myeloma?: self
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 67
Re: Newly diagnosed and overwhelmed
Hi Julie,
I'm very sorry to hear about your diagnosis. I wish there were some magic words that I could say that could undo what has happened, but I'm afraid there aren't. What I can say is that, although the diagnosis will change your life, you most likely have many years of that life still in front of you. Also, you have taken a key step in the direction of making sure you have as many years as possible in front of you by educating yourself, and by seeking advice and support from others who have traveled the same road.
In other words, welcome. I hope the community here can be of help.
As far as myeloma specialists in southwestern Michigan, I don't know of any, and I suspect the closest "true" myeloma specialists -- doctors who see and treat almost only myeloma patients -- are going to be in either Chicago or Indianapolis. Some people here in the forum are seen by hematologist-oncologists at the University of Michigan in Ann Arbor, but I believe most, if not all, of them are not truly myeloma specialists. There was a discussion about this a while back here in the forum. See:
"Myeloma specialist recommendation - Michigan or Chicago" (forum discussion started March 16, 2014)
There's also a list of myeloma treatment centers on this site. These are almost all cancer centers that have one or more doctors who see almost only myeloma patients:
https://myelomabeacon.org/treatment-centers/
Most likely, you will need to start treatment soon if your diagnosis was clear. However, even if you have to start treatment, you can still seek out a consultation with a specialist to get a second opinion about your diagnosis and treatment plan. I personally would advise doing that, and I also would ask the doctor you speak with to describe why he or she is certain you have myeloma (what diagnostic criteria were met).
Have you had a bone marrow biopsy? The data from the biopsy can be important in guiding your treatment and also in determining how advanced your disease is.
Other key numbers you'll want to educate yourself about are your "M-spike" (which comes from your "SPEP" test) and your free light chain levels as measured using a blood (not urine) test. Other key blood test results you'll want to pay attention to now and long term are your hemoglobin level, your calcium level, and your creatinine level.
This is probably more than you bargained for, so I'll stop now. I hope what I have written helps at least a little. Please know that you are not alone, and there are people here willing and able to help.
Best wishes,
Cheryl
I'm very sorry to hear about your diagnosis. I wish there were some magic words that I could say that could undo what has happened, but I'm afraid there aren't. What I can say is that, although the diagnosis will change your life, you most likely have many years of that life still in front of you. Also, you have taken a key step in the direction of making sure you have as many years as possible in front of you by educating yourself, and by seeking advice and support from others who have traveled the same road.
In other words, welcome. I hope the community here can be of help.
As far as myeloma specialists in southwestern Michigan, I don't know of any, and I suspect the closest "true" myeloma specialists -- doctors who see and treat almost only myeloma patients -- are going to be in either Chicago or Indianapolis. Some people here in the forum are seen by hematologist-oncologists at the University of Michigan in Ann Arbor, but I believe most, if not all, of them are not truly myeloma specialists. There was a discussion about this a while back here in the forum. See:
"Myeloma specialist recommendation - Michigan or Chicago" (forum discussion started March 16, 2014)
There's also a list of myeloma treatment centers on this site. These are almost all cancer centers that have one or more doctors who see almost only myeloma patients:
https://myelomabeacon.org/treatment-centers/
Most likely, you will need to start treatment soon if your diagnosis was clear. However, even if you have to start treatment, you can still seek out a consultation with a specialist to get a second opinion about your diagnosis and treatment plan. I personally would advise doing that, and I also would ask the doctor you speak with to describe why he or she is certain you have myeloma (what diagnostic criteria were met).
Have you had a bone marrow biopsy? The data from the biopsy can be important in guiding your treatment and also in determining how advanced your disease is.
Other key numbers you'll want to educate yourself about are your "M-spike" (which comes from your "SPEP" test) and your free light chain levels as measured using a blood (not urine) test. Other key blood test results you'll want to pay attention to now and long term are your hemoglobin level, your calcium level, and your creatinine level.
This is probably more than you bargained for, so I'll stop now. I hope what I have written helps at least a little. Please know that you are not alone, and there are people here willing and able to help.
Best wishes,
Cheryl
Re: Newly diagnosed and overwhelmed
Hi Julie,
I'm truly sorry to hear about your diagnosis. I don't know of any multiple myeloma specialists in southwest Michigan, but can tell you we have been very grateful for the treatment my husband has received at the University of Michigan's Multiple Myeloma Clinic. The doctors, nurses, and medical assistants are very compassionate and give patients / family members a great deal of hope and comfort as you deal with this very scary diagnosis. They participate in clinical trials for multiple myeloma, too.
My husband was diagnosed in May of 2011 and he was in a 2-year Phase III clinical trial at UM for newly diagnosed multiple myeloma patients (carfilzomib [Kyprolis] \ Revlimid \ dexamethasone). We live north of Gaylord, and the 3.5 hour drive one way (initially twice a week for 3 weeks per month) was ABSOLUTELY worth it, even through our horrible winters. His original M-protein was 5.1 g/dl and eventually he achieved a stringent complete response.
Unfortunately, he recently relapsed, but his current M-spike is 0.4 so for now his oncologist increased his Revlimid dose and added the dex again. If it continues to increase, the recommendation will be for carfilzomib / Cytoxan [cyclophosphamide] for 4 cycles and then auto stem cell transplant. He has enough for 2 transplants already at UM. We knew realistically this could eventually happen, but this time around we are not nearly as panicky as when he was initially diagnosed. We know he is in excellent hands.
Best wishes to you,
Chris M.
I'm truly sorry to hear about your diagnosis. I don't know of any multiple myeloma specialists in southwest Michigan, but can tell you we have been very grateful for the treatment my husband has received at the University of Michigan's Multiple Myeloma Clinic. The doctors, nurses, and medical assistants are very compassionate and give patients / family members a great deal of hope and comfort as you deal with this very scary diagnosis. They participate in clinical trials for multiple myeloma, too.
My husband was diagnosed in May of 2011 and he was in a 2-year Phase III clinical trial at UM for newly diagnosed multiple myeloma patients (carfilzomib [Kyprolis] \ Revlimid \ dexamethasone). We live north of Gaylord, and the 3.5 hour drive one way (initially twice a week for 3 weeks per month) was ABSOLUTELY worth it, even through our horrible winters. His original M-protein was 5.1 g/dl and eventually he achieved a stringent complete response.
Unfortunately, he recently relapsed, but his current M-spike is 0.4 so for now his oncologist increased his Revlimid dose and added the dex again. If it continues to increase, the recommendation will be for carfilzomib / Cytoxan [cyclophosphamide] for 4 cycles and then auto stem cell transplant. He has enough for 2 transplants already at UM. We knew realistically this could eventually happen, but this time around we are not nearly as panicky as when he was initially diagnosed. We know he is in excellent hands.
Best wishes to you,
Chris M.
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Chris M
Re: Newly diagnosed and overwhelmed
Hi Julie,
It sounds like you are not yet diagnosed, but awaiting some results. Be positive. Before I was positively diagnosed, I already broke two ribs, cracked my pelvis, and a vertebra in my back. All this was done casually, no serious sports. Since being diagnosed, broke more ribs, more back bones, to mention a few.
The point here is to tell you that if you do have multiple myeloma, you caught it early, which I hear is key to treatment. I've been into the process for 18 months and I'll be 63 next month.
So hang on.
It sounds like you are not yet diagnosed, but awaiting some results. Be positive. Before I was positively diagnosed, I already broke two ribs, cracked my pelvis, and a vertebra in my back. All this was done casually, no serious sports. Since being diagnosed, broke more ribs, more back bones, to mention a few.
The point here is to tell you that if you do have multiple myeloma, you caught it early, which I hear is key to treatment. I've been into the process for 18 months and I'll be 63 next month.
So hang on.
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weatley - Name: gary vlahov
- When were you/they diagnosed?: november 2013
- Age at diagnosis: 61
Re: Newly diagnosed and overwhelmed
Hi Chris M,
I'm sorry if what I wrote earlier in this thread about the University of Michigan's group of doctors seemed critical, or if it was incorrect. It's just my understanding that Dr. Jakubowiak, who was the myeloma specialist at Michigan who started the Kyprolis-Revlimid-dex trial, has left UM to go to to the University of Chicago, and that the hematologist-oncologists who remained are not myeloma specialists in the sense of focusing almost exclusively on that disease, as Dr. Jakubowiak did.
When I checked the UM website this morning to see who the doctors are who handle myeloma patients, all of them seem to be less specialized than your typical myeloma specialist, regularly see patients with leukemia or lymphoma in addition to myeloma. I also didn't recognize any of the names from recent research articles focused on myeloma.
If I'm wrong and there are some myeloma specialists on staff, that would be good to know, since questions about myeloma specialists in Michigan come up here in the forum now and then, and it usually seems that the best option is to refer people to Wayne State, to Chicago or Northwestern, or to Indiana, if they want to go to the nearest specialist.
I also realize that each doctor at UM who sees myeloma patients is probably seeing more myeloma patients on a regular basis than your typical local hematologist-oncologist, so, in that sense, they do have more experience than a local hemonc.
Thanks for sharing the experience you and your husband have had at UM.
I'm sorry if what I wrote earlier in this thread about the University of Michigan's group of doctors seemed critical, or if it was incorrect. It's just my understanding that Dr. Jakubowiak, who was the myeloma specialist at Michigan who started the Kyprolis-Revlimid-dex trial, has left UM to go to to the University of Chicago, and that the hematologist-oncologists who remained are not myeloma specialists in the sense of focusing almost exclusively on that disease, as Dr. Jakubowiak did.
When I checked the UM website this morning to see who the doctors are who handle myeloma patients, all of them seem to be less specialized than your typical myeloma specialist, regularly see patients with leukemia or lymphoma in addition to myeloma. I also didn't recognize any of the names from recent research articles focused on myeloma.
If I'm wrong and there are some myeloma specialists on staff, that would be good to know, since questions about myeloma specialists in Michigan come up here in the forum now and then, and it usually seems that the best option is to refer people to Wayne State, to Chicago or Northwestern, or to Indiana, if they want to go to the nearest specialist.
I also realize that each doctor at UM who sees myeloma patients is probably seeing more myeloma patients on a regular basis than your typical local hematologist-oncologist, so, in that sense, they do have more experience than a local hemonc.
Thanks for sharing the experience you and your husband have had at UM.
Re: Newly diagnosed and overwhelmed
Thank you for your replies. I have first oncologist appointment today at West MIchigan Cancer Center. Nervous but hopeful. I will definitely follow up with all the experts here. I definitely do not mind hearing differing points of view as I am sure each person has their own unique experience. Thank you all.
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julies - Name: julies
- Who do you know with myeloma?: self
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 67
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