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I’m a disabled veteran and was diagnosed with MM in October 2022. After 3 weeks of chemo, I was sent to the Seattle VAMC for the ASCT. Dr. Yu, MD, PHD is head of the transplant unit. The stem cell harvest was accomplished at the Fred Hutch Cancer Center in Seattle. The doctors and staff were amazing. They were thorough, informative and compassionate. It wasn’t fun, but there were no complications.
ReplyThanks for your feedback Bob-
The Hutch is one of the top ASCT institutions in the world. Good to read that your experience was top notch.
David Emerson
ReplyHi, I’m searching for the best Doctor in Richmond, Va specializing in Multiple Myeloma treatment. Thanks
ReplyHi Gerry-
While I cannot say that he is the “best” I can say that Dr. Mann is experienced.
https://healthtree.org/myeloma/community/directory/va/vcu-medical-center/hashim-mann
Good luck,
David Emerson
ReplyHello. I have MM and looking for a referal for a specialist and specialized treatment center center in my area. I reside in South Orange County, CA.
Thanks
Hi!!! Going through the process of finding a diagnosis, highly suspicious of MM. Any good MM specialist in Maryland?
ReplyHi Raymond-
It is difficult to find MM specialists these days as many oncs. simply say that they are MM specialists. My view is that the patient (you) must meet the person and ask him/her specific questions to gain your confidence.
https://www.medifind.com/conditions/multiple-myeloma/3561/doctors
Good luck,
David Emerson
ReplyIm in Pa at U of Penn hematology/oncology. Diagnosed with Mgus. Is this a good location should this progress?
ReplyHi Janice-
I replied to your question directly via email.
David Emerson
ReplyHi David, I was dignosed m.m. in Oct 2022. I went through inductive therepy with 5 cycles of cborgd, and then Autologus stem in April of 23, got m.r.d. positive test . Currently on 5 mg Rev. maintenance. Being treated at Upstate Syracuse Cancer Center great Hospital and Doctors. Would like to get the best of the best if and when I relapse do you have a recommendation for a specialist ? In N.Y. Thank you so much… Mr. Noble
ReplyHi Warren-
I am sorry to learn of your MM diagnosis though you appear to be doing well. Re your question about working with a MM specialist, you have a couple of choices. If you want to work with a true MM specialist then you will have to drive to Manhattan or to Boston for appointments.
This may sound more difficult than it is. By this I mean that you can meet with a specialist to establish a treatment plan, decide on your chemo cocktail, etc, in Manhattan and then have your local oncologist order diagnostic testing, chemotherapy, etc. in Syracuse.
More and more MM patients work with MM specialists long distance through telehealth.
I have to also add that it sounds as though you are comfortable and doing well with your oncs at Upstate Syracuse Cancer Center. If you choose to pursue FDA standard-of-care therapies then your current team may be fine.
A MM specialist at a large cancer center such as Dana-Farber, Mayo or MDAnderson will have access to clinical trials- say if you ever want to undergo CAR-T therapy. But it sounds like you are years away from that sort of decision-making.
Let me know if you have any questions.
David Emerson
ReplyHi Mr. Emmerson,
My endocrinologist sent me an e-mail last Friday night informing me that she is giving me a referral to oncology (through Stanford) for my ‘abnormal labs’. I haven’t been staged yet but am an avid researcher so I see the writing on the wall. I am a 70 year old woman who also has a short list of other rare Dxes (Ehlers-Danlos and achalasia among them) and so skip around from U.C.S.F. , Stanford and Sutter in order to find the best care. In your opinion, for MM, is Stanford or U.C.S.F the better choice?
I’m scrambling to get educated on myeloma and now am considering joining your group. There is just so much to learn and I hate to be snookered by doctors whether by ignorance or calculation. Thank you for sharing your expertise on this!
ReplyHi Nancy-
If I understand your post you have abnormal labs but no specific diagnosis yet? If this is the case, I encourage you to meet with an oncologist, undergo thorough diagnostic testing and get a specific diagnosis. I say this because multiple myeloma is often misdiagnosed and the presence of monoclonal proteins can indicate many different types of health issues (as you’ve seen).”Abnormal labs” are quite common in people over 50.
Both UCSF and Stanford have top notch MM specialists. My guess is that Stanford has done more autologous stem cell transplants if you go that route.
The bottom line is that your specific diagnosis will dictate the type of specialist you see. For example, if you are pre-MM (MGUS, SMM) you don’t have cancer but can reduce your increased risk of multiple myeloma. Further, you may choose to work with a MM specialist who specializes in a low-dose approach to managing MM- Dr. James Berenson in L.A.
It is up to you but I encourage you to get back in touch with me when you are diagnosed.
Hang in there,
David Emerson
ReplyHi David – recently had a scan that revealed extensive MM in several locations. Already experiencing severe back pain and want to hit the ground running. I am in Dayton, Ohio and from what I can see the some of the best MM treatment facilities and physicians near me are Chicago, Milwaukee and St. Louis. Please advise
ReplyHi Nick-
I am sorry to learn of your diagnosis of MM. It sounds as though you have bone involvement. Regarding myeloma specialists- the James in Columbus has several oncs. with experience with MM as does the Cleveland Clinic. You are correct in that there are several mm specialists is Chicago as well.
If fact, these days, if you intend to stick to the standard-of-care FDA approved therapy plan, then most major metropolitan centers have mm specialists.
https://cancer.osu.edu/find-a-doctor/search-physician-directory?ct=Multiple%20Myeloma
In my experience, consider having a local oncologist for chemo, radiation and routine testing (blood, urine, imaging, etc.) but work with a top MM specialist via telehealth. For example, if, say, the Mayo Clinic in Rochester, Mn, prescribes a specific chemo cocktail for your induction therapy (RVD and Daratumumab), then you will actually receive the therapy locally only because you don’t want to have to drive to Rochester, Mn to receive therapy that is the same as therapy you can get in Dayton.
If, however, you choose to have a specific procedure like an autologous stem cell transplant, you should go to a specific MM center that handles many ASCT’s annually.
I would recommend telehealth consultations with top MM centers like Mayo, Dana-Farber, MDAnderson, Stanford, others. If you would like a different approach to your therapy plan, consider talking to Dr. James Berenson in CA.
https://berensoncancercenter.com
To summarize, if you have early stage MM aka stage 1, consider taking a low-dose approach. If you are advanced, stage 2,3 MM, consider more aggressive approach.
Let me know if you have any questions.
David Emerson
ReplyWhile it makes sense to look for the best specialists in the field, it seems to me that treatment of MM, at least the first phase i.e. RVd + stem cell therapy has become a standard. In particular, results for the best hospitals and very similar to national average. Below is the link to Cleveland Clinic MM outcome. Cleveland Clinic is ranked 6th in USA. The difficult part starts after relapse occurs. There is whole alphabet of drugs available and I have no idea what could work for me. I would appreciate some rules, if any, one should follow.
Here is the link:
https://my.clevelandclinic.org/departments/cancer/outcomes/339-multiple-myeloma
Are there any MM specialists & MM Treatment Centers near Lawrenceville, Georgia? If no, where is the nearest and best for a person with MM living in Lawrenceville, GA? Thank you!
ReplyHi Dee-
If my google maps is correct, Lawrenceville is 40 minutes from Atlanta. Atlanta has both mm specialists as well as Emory- Winship Center- myeloma oncologists as well as an experienced center.
Good luck,
David Emerson
ReplyThank you, David! Is Dr. Leguizamo one of the treatment specialists you would recommend? If you feel uncomfortable sending your response to your site, please send it to my email address. But, even better, who are the Atlanta MM specialists you think are the best? Thank you so much!
ReplyHi Dee- Not knowing your stage, goals, age, etc. it is difficult to make recommendations for you. I will say however,, that the hospital itself being a myeloma center is important. Based on that, I would meet with their MM specialists and interview them. I mean, you are going to be seeing the person for years to come so..
https://www.myelomacrowd.org/myeloma/community/directory/Georgia/winship-cancer-institute-of-emory-university-atlanta-ga
Just a coment; I’ve pretty much realized that I am in standard care. So, I must do all I can to deal with this…hopefully in a practical way. Specialists are not part of my care unless I can find one willing to take my ….insurance.
I’m not whining, I’m doing ok so far. I think you already know my circumstance.
Thank you for all you do, David! More Power to You!
( no reply necessary).
Mr Emerson, I am a fairly new diagnosed MGUS patient since last June 2021. I am moving west of Boston next month about 45-60 min away. I have heard that Dana Farber and Mass General have MM specialists. My first question would be, do these MM doctors take MGUS patients? And secondly, could you recommend these specialists to me? I am single kidneyed, but also in Stage 3 renal failure. I did not know if that would make any difference in the selection process. My last appt with hematologist/ oncologist was in July. I feel I need to make an appt as soon as possible as I am sure it might take a long time to get in. I am 73 yrs old. I appreciate your taking the time to read this.
Replydx. with mgus 2009. progressed to smoltering this year based on bone marrow biopsy, 10-20% plasma cells. kappa/lambda ratio increased, but no CRAB symptoms. seeing hematologist/oncologist at university of new mexico comprehensive cancer center. she is watching and waiting, for any changes. should i get a second opinion and if so from which facility.
ReplyHow do i find a hospital and dr. Who specialzes in treating multiple myeloma
ReplyHi Ron-
You can use the app linked below. Let me know if you have any other questions.
https://www.myelomacrowd.org/myeloma/community/directory
David Emerson
ReplyI am a victim of Camp Lejeune contaminated water USMC and have developed Light Chain Disease and MGUS. I have stage 3 kidney disease holding stable. Oncologist has a wait and see approach? Any suggestions or should I just continue to monitor? My kidney function has remained stable for 3-4 years now but I feel just sitting around doing nothing is not proactive?
ReplyHi John-
I replied to directly via email.
David Emerson
ReplyCan you give me your thoughts on New York Cancer & Blood Specialists Port Jefferson Station. NY. Thank you.
ReplyHi Margaret-
I have no experience with New York Cancer & Blood Specialists. This doesn’t necessarily mean anything either way. I don’t believe this group specializes in MM so I have little interaction with them.
Let me know if you have any questions.
David Emerson
ReplyLooking for smouldering multiple myeloma oncologists in Virginia . Thank you…
ReplyI am 65yrs old and
digonised liht chainMM in Feb.2022.I am u der chemotherapy with Bortezomib inj 2 mg with Dexametha sone 40mg weekly and lenid cap 25 mg daily.As test result it is remission mode .Homoglobin is above 10.5 to 12.5,RBC is 4.6 to 5.25 ,WBC is vary from 80000 to 182000.Crtinine BP and sugar are normal.Component Of WBC are normal. but I have back bone till date.pl suggest .Iam under treatment of cancer hospital Jaipur Rajasthan India Sr Hematologist blood cancer specialist.As per him therapy beco continued till 8 months.
Dear Inder Deo Singh-
I am sorry to read of your MM diagnosis. However, if I read your post correctly, you have achieved remission and your blood and kidney function is normal.
You seem to mention a problem with your spine (back bone) though I can’t understand what you are asking about. I believe you are saying that you will continue therapy.
If you are saying that you have bone involvement in your spine, if you have a lesion in your back bone that is causing pain, your therapy options are two-
Either undergo local radiation to the area of the lesion or
undergo more chemotherapy.
It sounds as though you are continuing therapy in hopes of illiminating your bone involvement.
Good luck,
David Emerson
ReplyHi Joe-
I am sorry to learn of your MM diagnosis. Your prognosis depends largely on your stage, symptoms, age and general health.
How old are you currently?
How is your health otherwise?
What are your symptoms (nerve, bone, joint pain?)
What are your goals?
I don’t mean to sound nosey. Just trying to understand the basics.
let me know,
thanks,
David Emerson
ReplyI am 58, health good,back pain, live a long life. I go on Monday to get my results To see if my cancer is in remission or not I have mm just diagnosed in October of 2022
ReplyHang in there Diane. Let me know if you have any questions.
David Emerson
ReplyDo you have an opinion about MM care through Levine Cancer Insitute at Carolinas Medical Center in CharlotteNC?
ReplyHi Emily-
While I have no personal experience with the Levine Center, my understanding is that Peter M. Voorhees, MD, and Saad Z. Usmani, MD are both knowledgable MM oncs. Keep in mind that they are board-certified oncologists and therefore practice only FDA approved standard-of-care therapies.
Good luck,
David Emerson
ReplyI have suspected this but just never said anything outloud. I have an Oncologist/Hematologist, and as such, they treat all cancer patients. They pretty much go by test numbers and refer the patient to different treatments and order prescritions. They do not ” specialize” or know as much as someone trained in one certain cancer; namely Multiple Myeloma. Standard care has no specific form of cancer to concentrate on. You know, that’s not very comforting, but still, an Oncologist fights cancer……all cancers. Am I wrong in thinking there is one cancer but depending on where it’s located initially, determines the type of cancer; like lung or breast, or cervical, or MM? It’s a little late for my brain to wake up. I guess my “Incognix”, is working, even if my guess is wrong. I hope everyone gets more knowledge than me on their journey through this beast of a cancer.
ReplyHi, I live in the Las Vegas area. Are there any Multiple Myeloma specialists in my area? Is there a hospital that treats my condition ? I have had MM for almost 2 years. Blood work is good. I am only taking Revlimid now. My oncologist isn’t certain about how I should be treated going forward. Can you give me any advice or recommend a specialist in my area? Ty so much. I am 63 yrs old
ReplyHi John-
Good to read that your bloodwork is good. In my experience you should be undergoing regular blood testing- say every 3-6 months. Just to keep an eye on your health.
According to this link, these oncologist have experience with MM though nothing says that these oncologists are “specialists.”
https://doctor.webmd.com/providers/condition/multiple-myeloma/nevada/las-vegas
Consider an anti-mm diet as well as supplementations and lifestyle therapies.
Good luck,
David Emerson
ReplyMy wife has MM. She has had a relapse in less than two years of the bone marrow transplant. She has light chain MM. We have relocated to NC. within the last year. Is there a Center of Excellence in the state or a provider that is on the cutting edge. We will travel distance is not an issue. We live in Charlotte. Thanks
ReplyHi Patrick-
I am sorry to read of your wife’s MM diagnosis as well as her recent relapse. Both Duke Cancer Institute and the UNC Lineberger Cancer center are top notch MM centers. I don’t know if either has the official Center for Excellence moniker but both are highly rated by MM patients I work with.
https://www.dukehealth.org/treatments/cancer/myeloma
https://unclineberger.org/myeloma/what-to-expect/
Let me know if you have any questions.
David Emerson
ReplyI was diagnosed with MGUS in 2021. I will be having blood work again this July. We are moving outside of Boston in fall. Could you direct me to where I could best be treated in that area?
ReplyHi Karen-
A top-notch cancer center in Boston is Dana-Farber. More importantly, Dana-Farber has a staff of knowledgable MM specialists. My personal favorite is a man named Ken Anderson but not sure he is taking new patients.
Keep in mind that D-F’s approach to MM is to treat MM aggressively. Keep in mind also that D-F will probably try to talk you into a clinical trial if you progress to SMM. But that should be well down the road.
https://www.dana-farber.org/multiple-myeloma-program/
Good luck and let me know if you have any questions.
David Emerson
ReplyHi Dave,
I was just diagnosed tentatively with SM two weeks ago, sadly a week after my father passed away from MM. I am 54, exercise
5 times a week, vegetarian, outdoor enthusiast, non smoker and rarely drink alcohol.
My first bone scan is June 7th and my doctor is referring me to Sloan Kettering. I am meditating, trying to eat 90 % organic and plant based. I would appreciate any thoughts and recommendations on my situation and supplements etc.
Thank you for your time and keep on with a healthy life my friend! 💪🏼
Kelly
ReplyHi Kelly-
I just replied to your post via your email address. Let me know if you have any questions.
David Emerson
ReplyBest MM doctor/hospital in Iowa. I am currently schedule for a blood cell transfusion in the next month.
ReplyHi Sally-
I sent you information directly to you via your email.
Good luck,
David Emerson
ReplyHello, my father-in-law’s multiple myeloma has resurfaced after 5 years of basically being in remission. He lives overseas and will be a foreign visitor seeking a consultation and treatment options with an MM specialist. Know of any great ones in the NJ/NY/CT or DC/MD/VA areas?
Thanks,
Eddie
ReplyHi Eddie-
I will link MM specialists below. There are many listed in your areas. I can refer MM specialists in Europe as well. I will start with the NYC area as there are several listed there but let me know if you seek others.
Both Memorial Sloan Kettering and Mt. Sinai are top MM centers for conventional MM oncology.
https://www.mskcc.org/cancer-care/doctors/sergio-giralt
https://www.mountsinai.org/profiles/sundar-jagannath
https://www.mountsinai.org/profiles/ajai-chari
https://nyulangone.org/doctors/1487053484/faith-e-davies
David Emerson
ReplyI was diagnosed with mgus and ma being monitored every six months. My free lambda light chain is climbing over 25 points every six months and still have bence jones protein and a high igm. I am told that i do not need to worry as of yet. I am currently at MD Anderson. I would like a second opinion. Who do you recommend in the Houston area?
ReplyHi David, I’m looking for a MM Specialist in Philadelphia,PA ?
ReplyHi Steve-
I replied to your question directly via email. Let me know if you have any questions.
David Emerson
ReplyI have smoldering multiply myeloma and I am looking for a specialist. My oncologist is the same one I used with my breast cancer. I live in NJ. I am willing to travel. Can the M-spike numbers drop? I was 1.89 supposedly dropped to 1.47….I find this very hard to believe.
ReplyHi Gina-
Yes, your m-spike and other diagnostic markers can drop. There are studies confirming the mm killing ability of several supplements such as curcumin. Further, nutrition, lifestyle, other therapies have also been cited to cause apoptosis aka kill mm. Do you have any symptoms such as nerve or bone pain? DVT?
You live in NJ- closer to Philadelphia or New York city? A better gauge of your risk is your freelight chain ratio.
Let me know. Hang in there.
David Emerson
ReplyBest MM specialist in the Pittsburgh area. Also willing to travel anywhere in the US for 2nd opinion consultation
ReplyHi Leona-
I am assuming that you are asking for MM specialists in the Pittsburgh area. As far as I can tell, there are no oncologists who specialize only in MM. There is a staff of hematologist oncologists but no specialists that I have heard of.
https://hillman.upmc.com/mario-lemieux-center/experts
As for a second opinion, I encourage a second opinion that will offer a board-certified oncologist yet a doctor who will offer a different perspective than the usual FDA standard-of-care perspective. This would be James Berenson M.D. MM specialist in CA. Dr. Berenson does telehealth second opinions. $1000.00.
If you would like to have a face to face appt. I would suggest any of the MM specialists in major metropolitan areas close to you such as Chicago, NYC, Phil., Columbus, Oh.
Let me know if you have any questions. Good luck.
David Emerson
Replyyou are welcome Kathy- let me know if you have any questions.
David Emerson
ReplyHello, my younger brother was just recently diagnosed with Multiple Myeloma and is just recently undergoing Chemo. I, of course am devastated to learn this and want the best treatment options for his survival. He (my brother) also shared that he also learned that a male cousin, on my dad’s side, is also diagnosed with the same Cancer. I would appreciate any information you can share. Thank you so much. God bless you and your journey as well.
ReplyHi Rita-
I replied to your post via your direct email address.
Thanks.
David Emerson
ReplyI am a 71 year old woman who was hospitalized for a week at Bayhealth Hospital in Dover DE, in October 2021 for a blood infection resulting in discitis and myelitis which was treated with antibiotics via infusion therapy. Upon discharge, an appointment was made for me to consult a hematologist (Dr. Abeer Alfaraj at Bayhealth) at end of January 2022 since blood work indicated anemia. After multiple blood and urine tests, Multiple Myeloma was determined. The PET scan showed no FDG avid osseous lesion. A bone marrow biopsy came back with plasma cell myeloma (kappa restricted) involving 50-60%of bone marrow. Dr. Alfaraj is still waiting for results for one gene. She has suggested RVD treatments to begin asap and has set me up for a consultation with an oncologist at Thomas Jefferson University Hospital in Philadelphia (Oncologist Dr. Adam Binder) on March 30 to discuss possible stem cell replacement and/or other treatment options. I’m feeling overwhelmed in trying to decide whether I should stay with the above stated plan or to find an experienced MM Specialist and Hospital within a reasonable distance from Dover (2-3 hours drive). While I do think Dr. Alfaraj is very knowledgeable, she is in her 2nd year of fellowship at Bayhealth Hospital; I would like to know the Dr treating me has the experience to enhance my chances of a favorable outcome in managing the disease. Until the last couple of years I have been healthy and active. I have lost about 8-10 pounds since October (which is quite a bit since I now weigh about 98 lbs.) but I do try to get in exercise and/or walk every day. Any advice you can offer would be most appreciated.
ReplyHi Judy-
I am sorry to read of your MM diagnosis. It is totally normal to feel overwhelmed.
Dr. Alfaraj has prescribed what is referred to as the “standard-of-care” for newly diagnosed MM patients. This is induction therapy (4-6 rounds of RVd), an autologous stem cell transplant followed by two years or more of maintenance therapy (usually revlimid).
Depending on your stage, symptoms and personal goals at diagnosis, this treatment plan may or may not be the best treatment plan for you. If your PET scan indicated that you have no bone involvement, I think there is reason to believe that you are early stage MM, MM stage 1.
In more concrete terms, you may prefer to undergo only 2 or 3 rounds of RVd, stabilize your MM (reach remission) and then decide if you should take a break or undergo more therapy. My point is that it is a lot to decide on six months of aggressive chemo all at the beginning.
I agree that Dr. Alfaraj is knowledgable however because MM is a rare blood cancer (less than 2% of all cancer diagnoses, approx. 10% of blood cancer diagnoses), she probably has little if any experience treating MM.
You are correct in thinking that a MM specialist would offer you a better chance of a positive outcome. I am happy to recommend specialists in the Phil. area.
If you are interested in learning about evidence-based, anti-MM nutrition, supplementation and lifestyle therapies, please consider the MM cancer coaching program.
Let me know if you have any questions.
Hang in there,
David Emerson
ReplyMy 58 year old son was recently diagnosed with multiple myeloma. There is no kidney involvement and no weight loss but has 63% plasma cells.He is being seen by Dr. Kathleen Beekman out of St. Joseph Mercy Hospital in Ann Arbor. She is a hematologist oncologist. An MRI revealed a cyst in the spinal column.. not related to the MM and he will have it removed on 2-25. Dr. Beekman says he should be able to start MM treatment about three weeks after the surgery. Should he get another opinion and where would you recommend? I lost my younger son to glioblastoma three years ago. Up till then, no history of cancer in our family.
ReplyHi Anne-
I am sorry to learn of your son’s MM diagnosis. Great to read there is no kidney involvement. 63% monoclonal proteins in your son’s bone marrow is to be expected- meaning, not a lot, not a little…
As for your question about getting a second opinion, I would say yes. While I’m sure that Dr. Beekman is a fine hem/onc. because MM is only 10% of all blood cancer diagnoses, there is a good chance that she has relatively little MM experience.
I will email you the fourth edition of the e-book I’ve written about MM. As a long-term survivor I have a different perspective on MM treatment.
https://www.myelomacrowd.org/doctor-directory/university-of-michigan-rogel-cancer-center/
https://www.myelomacrowd.org/doctor-directory/michigan-state-university-breslin-cancer/
A MM specialist is always to be recommended.
Let me know if you have any questions.
Hang in there,
David Emerson
ReplyHI Mary-
In order for me to say anything helpful to you I need to understand his situation. Diagnosis, stage, symptoms, any questions you may have. Etc.
Let me know, hang in there.
David Emerson
ReplyMy MM diagnosis came last month. I live in southwestern Michigan, and have started chemotherapy treatments. I would love to be able to find a specialist at one of the top hospitals to add to my team and give myself the best chance. I am currently on track for stem cell transplant to possible happen in the early spring. Please let me know of some possible top institutes to look into.
ReplyHi Susan-
I am sorry to read of your MM diagnosis. When you say you live in SW Michican, are you able to drive to Chicago? If so, there are a number of experienced MM specialists there. I will link their names below.
More importantly, depending on your age, MM symptoms and stage, an ASCT may bring risks to you. For example, a young (50’s or 60’s), stage 1 MM patient may enjoy a longer OS and higher quality of life with novel therapies alone.
See the Great Lakes listing in the link below-
https://www.myelomacrowd.org/myeloma-directory/
Let me know if you have any questions. Hang in there,
David Emerson
ReplyHi David, I was diagnosed with MM earlier this year and had gone through treatments so far so good. I’m not so sure about the next course of treatment the odds are 50/50 and Very extreme to me. I live in Tennessee what hospital do you recommend? Also I Where should I go for a second opinion?
ReplyHi Jamis-
Two considerations. First, I know of no MM specialists in Tennessee. As for your next course of therapies, I would have to understand your current state of MM (m-spike, BMB, etc.) as well as your therapy choices (chemo regimens?) to give you my opinion, outline my thinking.
For example, an autologous stem cell transplant may be, as you say, very extreme, for your current situation. This depends on what therapy you already done and where you are currently.
Hang in there,
David Emerson
ReplyI am at day D+60 of autologous SCT at the Mayo Clinic under the care of Dr Craig B Reeder
So far so good but M Spike only at 1 after 60 days.
Am I at the best facility in the West in your opinion?
Thanks
Hi Tom-
In a word, yes, Mayo is an excellent MM center. Impossible to say any one of the top 5 centers are “the best.” Mayo, UAMS, MDA, the top centers.
You didn’t ask this but I will offer my thinking on this. To say “so far so good but m-spike only at 1 after 60 days” indicates the common thinking that complete remission is the goal for ASCT. While everyone wants to achieve the lowest, deepest remission post ASCT, as the study linked below explains, there is no exact correlation with remission and OS (overall survival aka length of life).
Your goal as a MM patient, in my experience, is to balance toxicity with the long-term control of your MM.
Good luck,
David Emerson
ReplyWhich hospitals in NY or nearby are best for Multiple Myeloma treatment?
ReplyHi Carmen-
I am assuming that you are interested in MM treatment in Manhattan. Two issues. First the top two hospitals, and there will be debate on this, are Memorial Sloan-Kettering Cancer Center and Weill Cornell. The second issue is/are specific MM specialists. There are many top people and these two institutions as well as at other institutions.
David Emerson
ReplyMy name is Riva and my brother was just diagnose with MM. We are at Northwestern Hospital downtown Chicago. They are still running test, but very certain it is MM. He is 44 yrs old never had any health issues. Does Smoke, doesn’t drink or due any drugs. 7.12.21 He took his 1st Moderna Shot and about a week later started feeling body aches. Another went by and he started to have really bad back pain and started to retain water. Trying to find the best place to start his treatment. Either we stay at Northwestern Hos. Or we are thinking of going for 2nd opinion UChicago Medicine -Comprehensive Cancer Center. location 5841 S Maryland Ave Chi. IL 60637. Thank you!!
ReplyHi Riva-
I am sorry to read of your brother’s MM diagnosis. Northwestern is a fine facility. Let me know if there is anything that PeopleBeatingCancer can do for either of you. Hang in there,
David Emerson
ReplyThank you David! I will. God Willing !! He can recovery and live a long health life.
David – I really want to take him to Mayo Clinic In MN, but i dont know what the process or cost would be. Hoping and Praying God heals him!
Thank you David!
Lord Bless!
Hi Riva- I don’t know the process at Mayo either but I will say that Mayo has many top notch MM specialists for you to talk to. Good luck.
ReplyHello,
There is a probability that I have MM and live in the Raleigh/Durham area.
Any good socialist in this area that you know of?
They are sending me to Duke for my initial consult.
Thank you!!
ReplyHi Chrissy-
I am going to assume that you are asking about MM specialists (not socialists) in your area. Yes, Duke is a good place to start. According to the MM Crowd website, there are 3 MM specialists listed below-
I will send possible questions to your email inbox. Let me know if you have any other questions.
David Emerson
ReplyOh my gosh, definitely meant to write specialist.
Thank you for the information.
ReplyHi my son has multy myoloma since 5 months taking alot of pills and it seams there is now too much protein in his blood .He will not listen at me or his sister to see a Cancer special Clinic. I even bought him your Book and others….I recommended to ask his Dr to get a Urin Test done and also a Ultrasound from his Spleen or even a Kappa light chain Test there is also something wrong with his plasma cells how can we get him motivated to get a second treatment opinion before his kidneys etc get demaged Thank you for your time
ReplyHi Melita-
I am sorry to learn of your son’s MM diagnosis. While you are correct on all counts, I cannot offer any advice as to how to get him to see an oncologist. Hang in there,
David Emerson
ReplyHi!!! Going through the process of finding a diagnosis for my dad, highly suspicious of MM. Any good specialist in south Florida?? I have read about the Mayo clinic and the MOFFIT cancer center, any suggestions??
ReplyHi Juliana-
You are wise to be “highly suspicious” of MM. You are correct that Mayo in Jacksonville and Moffitt in Tampa both have MM specialists. However, when I read “south Florida” I think of Miame.
In my opinion Dr. Landgren is an excellent MM specialist. Keep in mind however that Dr. Landgren is totally focused on conventional MM treatment. By this I mean that we will discuss, propose, etc. only FDA approved, standard-of-care MM therapies.
This is fine (an as it happens, necessary) as long as you understand this going in.
Let me know if you have any questions.
David Emerson
ReplyHi Juliette-
I have little experience with MM specialists in Detroit. However, this list may help-
https://www.healthgrades.com/find-a-doctor/michigan/best-doctors-for-multiple-myeloma-in-detroit
David Emerson
ReplyHi Kathy-
I replied to you directly via your email address. Let me know if you have any questions.
David Emerson
ReplyWhat are the top and most experienced/effective hospitals in the US for treating multiple myeloma.
ReplyHi Barbara-
https://peoplebeatingcancer.org/top-multiple-myeloma-hospitals-multiple-myeloma-specialists/
David Emerson
ReplyI’m sorry, am I missing something. I do not see a link or list of top doctors/hospitals on this website you linked. I’m in the San Francisco Bay area. Thanks.
ReplyHi Kristi-
There are several articles about MM care as you scroll down the page. I’m pretty sure that Stanford is on the list, or should be. If you are willing to travel to LA, you could see several MM specialists at Cedar-Sinai or Dr. James Berenson who has a clinic in West Hollywood.
https://peoplebeatingcancer.org/top-multiple-myeloma-hospitals-multiple-myeloma-specialists/
David Emerson
Replyi have mm near kansas city, mo. for about 6 months. losing my local dr. is there a good treatment center near me.
ReplyHi Steve-
Gary Peterson of MyelomaSurvival gives high praise to Dr. Siddhartha Ganguly-
David Emerson
ReplyI had a SCT in July 2005 at Mayo Clinic in Rochester, MN. Dr. Martha Lacy was my doctor along with wonderful team of doctors and nurses.
I have been very fortunate to have been in remission for almost 16 years now. My husband and I could not have been happier with the team of medical personnel. Hopefully I remain in remission but should I relapse we will definitely go back to Mayo Clinic in Rochester, MN.
Hi Shirley,
A 16 plus year remission is a testament to both you and the Mayo Clinic. Thank you for your input.
David Emerson
ReplyMy daughter-in-law died after 2 years of diagnosis of MM at age 52. I am 82 years old and was diagnosed 2 years ago with CLL with pt17 and p53. I am on ventoclax. I am going to Dr. Bingham at HOA in Syracuse,NY. Can you tell me if I should have a second opinion and is there such a specialist for this particular type of leukemia. I am not very computer literate. My WBC is 2.9, RBC is 3.48, HGB is 11.2, HCT is 33.9 and PLT 161. Can you help me, please. Thanks
ReplyHi Cathy-
I am sorry to read of your daughter-in-law’s MM. I know a bit about chronic myeloid leukemia but I only enough to encourage a second opinion. I do not know of a leukemia specialist in the Syracuse area.
Good luck,
David Emerson
ReplyHi Jane-
The link below to the write up about the James Cancer Center at OSU talks about MM specialists (M.D.s) as well as support staff and areas of study such as CAR-T cell therapy, transplantation, etc. My point is it is not one doctor but a group of Dr.s that study MM and associated issues.
Let me know if you have any questions.
Hang in there,
David Emerson
ReplyIf a myeloma specialist is not available, how can a patient consult with one from a distance?
ReplyHi Sandy-
You would be able to identify MM specialists by searching online. For example, I have linked some below.
David Emerson
Reply