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I have been diagnosed with CKD stage 3. I also have mm and aFib. The nephrologist yesterday said my kidney function is actually very good but was concerned about the afib and recommended that I increase my potassium level to 4– it was at 3.7 with my last bloodwork. I’m concerned about increasing my potassium level since I believe that potassium is hard on the kidneys. Can you recommend a way to protect my kidneys and also help with my aFib. I have had mm for 3 years, was in remission for almost 2 years and had my second chemo treatment in Dec of 23 . I’m on Darzalex once a month and am doing well. I have tested positive for c dif but with no toxins. My creatinine and bun are within normal range and my eGRF is 56. Any suggestions would be appreciated. Thanks
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ReplyOh my; you are my inspiration. The rub is money…..plain and simple, for me.
I decided, however, to get off chemo for as long as I can possibly do it. I don’t have exotic supplements and certainly cannot travel to see alternative practitioners. SO, I will continue my bottom line supplements, drink lots of water, and pay attention to my body more; like taking a dog for a walk, I will do the same for myself; even when I have to nag myself to do it You know it takes mental strength too to fight this beast, and I’m still working on that. Circumstances make this part a challenge sometimes.
Well, I feel that i know you better, David!!
Thank you for this …..xo
Hi David, Did you receive the email with attachments that I sent to you several days ago? It might have gone to your “junk box”. I am the Air Force, retired, a guy that you shared excellent advice with. Thanks a million for letting me know whether you received the test results you requested.
ReplyHi Tom- I did. I replied to you with the email below. I sent that reply on July 2.
Let me know, thanks. David
Hi Tom-
If I read your diagnostic testing history correctly, your:
Protein, Kidney, FLChains, white blood cells, immunoglobulins, etc. all indicate steady results.
Your m-spike is the one reading that I don’t understand. It gives a percentage rather than a specific number?
Are you experiencing any symptoms such as bone, joint or nerve pain? Any pins and needles?
David Emerson
—
David Emerson
Multiple Myeloma survivor
Director, Galen Foundation
David.PeopleBeatingCancer@gmail.com
ReplyFascinating! I’m paralized due to spinal compression from myeloma. Wish I could have this treatment
ReplyHi Heather-
I am sorry for your spinal compression. This may or may not help but I was talking to a newly diagnosed MM patient last week who had 4 injections of kyphoplasty.
Hang in there,
David Emerson
Reply[…] David Emerson: Myeloma Survivor Since 2/94 […]
Reply[…] Second Opinion-Multiple Myeloma Cancer Coaching Multiple Myeloma: Car-T Cell Immunotherapy Update David Emerson: Multiple Myeloma Survivor Since 3/94 My Multipe Myeloma journey: I started getting MM symptoms 4 years prior to CAR-T and was […]
Reply[…] Second Opinion-Multiple Myeloma Cancer Coaching Multiple Myeloma: Car-T Cell Immunotherapy Update David Emerson: Multiple Myeloma Survivor Since 3/94 My Multipe Myeloma journey: I started getting MM symptoms 4 years prior to CAR-T and was […]
Reply[…] David Emerson: Multiple Myeloma Survivor Since 3/94 […]
Reply[…] David Emerson: Multiple Myeloma Survivor Since 3/94 […]
ReplyDoes Brzezinski’s treatment still administer antineoplaston therapy ? Our daughter age 42 has stage-4 breast cancer. She had surgery, chemo, radiation at stage-3. Having a biopsy done 5/2/2019 . She is still working and has little pain. Does the Burzynski Clinic do testing, MRI, PET etc. Our daughters Aetna insurance needs no referrals. So hopefully most will be covered. We are from NJ and I ask Clinic for some information today. We are not wealthy and would drive and find modest accommodation. I hope. Thanks for anything that could help us.
Stanley
[…] David Emerson: Multiple Myeloma Survivor Since 3/94 Stem Cell Transplantation- Side Effects, GvHD, Complications and Overall Survival Stem Cell Transplant for Blood Cancers- What you Need to Know Sibling Cord Blood May Offer Best Chance For Bone Marrow Transplant […]
Reply[…] David Emerson: Multiple Myeloma Survivor Since 3/94 […]
Reply[…] David Emerson- Multiple Myeloma Survivor Since 3/94 […]
ReplyHi David, the myeloma to mum (75 years) after two years is back (she had done velkade alkeran and cortisone). Now mum should do lenalidomide and cortisone, and I am very worried about these two drugs and toxicity. Can I ask you why in the pdf of the integration for the revlmid do you suggest only curcumin? thank you very much for your help
ReplyHi Elga,
Several things to consider. I agree that you should be concerned about toxicity of chemotherapy for your mom. The primary purpose of the MM CC program is to consider the program in its entirety. There are several integrative therapies for bortezomib therapy listed throughout the MM CC guides from nutrition to CBD oil to curcumin. Though a specific therapy such as detoxification might not be listed as an “integrative” therapy, research has shown it to enhance the efficacy of chemo while reducing side effects.
Let me know if this makes sense or if you have any questions.
Thanks
David Emerson
Reply[…] David Emerson: Multiple Myeloma Survivor Since 3/94 […]
Reply[…] David Emerson: Multiple Myeloma Survivor Since 3/94 […]
Reply[…] David Emerson: Multiple Myeloma Survivor Since 3/94 […]
Reply[…] David Emerson: Multiple Myeloma Survivor Since 3/94 […]
Reply[…] David Emerson: Multiple Myeloma Survivor Since 3/94 […]
Reply[…] David Emerson: Multiple Myeloma Survivor Since 3/94 […]
Reply[…] David Emerson: Multiple Myeloma Survivor Since 3/94 […]
Reply[…] I am both a cancer survivor and cancer coach. I have lived in complete remission from my “incurable” cancer since early ’99. […]
Reply[…] a “diet.” I recommend a lifestyle change regarding what you eat and why. And after all, I have been living with an incurable cancer since 1994. This nutritional lifestyle change is pretty easy, step by […]
ReplySir I am going to email you my father blood report ..Sir he is a depression patient for last 20 years..I gave conventional medicines for last one and half year but since October we are finding that they are enjoy working.his weight has fallen down to 45 kg and now I believe that he wll not be able to take chemo anymore.I recently came to know non conventional therapies which cure cancer.I stay in India can you please guide me how can I do therapies at home.Pleas guide him I have only him and I can’t live without him..Plz do reply me back.
ReplyDear David,
I have been actively searching for a coach for my Mom who has MM.
After reviewing the webinar, she had some questions, I was wondering if you have an email that I can write to you there?( personally I am not comfortable with blogs)
Thanks for being there!😊
Sincerely, a concerned daughter,
Jill
Jillds7@icloud.com
I lost both brother’s and my father to cancers.All youger than I am now. I am soon to be 70. Now its my turn?
I am eager to ask you and any others about positive thought processes. I feel I have brought (smouldering Myeloma}this upon myself thinking that cancer would be my end too! At this moment I am in the wait and see mode but have done much study in the last few weeks since diagnosis and feel a combination of several positive self healing must help. These include, First and foremost, a meditative, self affirmation that I am washing the problem out of my body, I do this physically in the mountain stream where I live. Nutrition, eating only organic foods of known cancer fighting value, exercise;mostly walking and cycling but am learning yoga. Removal of toxins from my body with colon flushing and sauna, Magnesium baths, Several affirmations during the day. I have had negative experiences with more than one doctor as I don’t wish to go down the chemotherapy path. I feel that we are all equipped with the right biology to fix ourselves, an example best described when we accidently cut ourselves, without intervention we heal. I am interested in self administered urine therapy but feel I am grabbing at straws. I tend to go through cycles of positive times and deep depression but feel I can curb the depression with mind control. Its hard when a Christian friend doing “the right things” with her MM suddenly has spine failure after feeling she had it beat. My question to you is based on my present approaches in particular positive mindfulness. Am I wrong?
An issue I feel we need to aware ourselves of, I have read so much in the pat few weeks and discovered a precurser of Mgus, H Pylori. I was treated for this about 10 years ago, In addition I was on a drug to block reflux for too many years Drs assured me there were no known side effects, Perhaps Pylori was one?
Hi Rob-
You are correct, there are several mind-body therapies that have been shown to reduce the risk of cancer. Further, there are several ways to increase the risk of multiple myeloma. HPV and certain environmental toxics both increase the risk of MM. H pylori is suspected but not proven to be linked to either MGUS or MM.
Have you been diagnosed with cancer?
David Emerson
ReplyDave,
Has it been your experience with LE Advanced bio curriculum w/ ginger and tumerones that because of its highly touted bioavailability (400mg = 2500 mg) that you don’t need to take 8 grams (13 capsules @600mg) of this supplement?
Mik Palumbo
Hi Mike-
I approach the issue in your question from a different perspective. I do take LE Super bio-curcumin. I have taken different brands since Margaret began writing about it in 2006. Further, I have been in CR since ’99. I take only one capsule (400mg) because I remain in CR and believe I will be taking curcumin for the rest of my life. While I have never found studies that document negative effects from supplementing too much curcumin I have a fundamental belief that I shouldn’t take too much.
Having said the above, if I ever relapsed I would increase my dose of curcumin.
David Emerson
Replythanks for the reply…
I was just trying to do the math and it seems that each 600 mg capsules provides approximately 3.75 of bioavailability of this product.
That said, to consume 8 grams, 2 capsules would get one very best that total…
Just an observation…
Dave,
Has it been your experience with LE Advanced bio curriculum w/ ginger and timezones that because of its high touted bioavailability (400mg = 2500 mg) that you don’t need to take 8 grams (13 capsules @600mg) of this supplement?
Mik Palumbo
My son has stage 4 metastatic Neuroblastoma, he recently relapsed in June and we have been told they are just keeping it at bay but I’m looking into more ! PleAse help David
ReplyHi Ben-
I am sorry to read of your son’s neuroblastoma diagnosis. As you know neuroblastoma is a difficult cancer. While the therapies cited below have shown efficacy against neuroblastoma, the research is limited.
Immune Therapies for Neuroblastoma
Curcumin induces apoptosis in human neuroblastoma cells via inhibition of AKT and Foxo3a nuclear translocation.
Resveratrol Inhibits Tumor Growth of Human Neuroblastoma and …
Where conventional oncology is considered, I would research and undergo “integrative” therapies if you are considering conventional chemotherapy drugs like the ones below.
The main chemo drugs used include:
Cyclophosphamide or ifosfamide.
Cisplatin or carboplatin.
Vincristine.
Doxorubicin (Adriamycin)
Etoposide.
Topotecan.
Busulfan and melphalan (sometimes used during stem cell transplant)
If it were my son I would through every evidence-based non-conventional therapy at neuroblastoma I could.
Let me know if you have any questions.
Hang in there.
David Emerson
ReplyI realized that you have asked about my M spike, I asked my doc but he did not tell me. I must say he was a conventional doc but now he is on the integrative side. I don’t know what that means in treating me. Whether it’s good or a bad thing.
I don’t want to rush on chemo but is there any way the treatment you suggested can help me or do they only Work best while on chemo?
Again I look forward to you advice.
ReplyHi Sim-
Yes, there are evidence-based non-toxic therapies- nutrition, supplementation, bone health, etc. I have remained in complete remission for years now by living a sort of anti-MM lifestyle with these therapies. The document that I emailed you is one of 13 different MM cancer coaching guides that I have researched and collected into what I call the MM CC program.
I will send you the Introduction to outline and explainthe program. Also, if your Dr. considers you to be early stage then he and you both don’t want to begin undergoing toxic therapies.
Look in you email inbox.
David
ReplyThank you for your the great information…i will email you my results now.
Sim
ReplyAlso i must say my total protein is 149 …range is (62-85) G/L
Globulin is 123 g/l …normal range is (26-45)
if you wish i could email these recent results to you. Just provide me with an email address.
ReplyHi Sim-
Yes, please email your test results to david.peoplebeatingcancer@gmail.com–
D
ReplyHi David,
Thanks for sharing your story with us mm patients, very inspiring. I was diagnosed with mm in late 2015. this was discovered from a random blood test. From there on I have been seeing an oncologist who gave me a series test to do. MRI at the time in 2016 return negative, Skeletal survey also return negative, but at that time my HB was 9, bence jones protein was present. Biopsy return positived, but the doc refused to accepted the results as the first reply from Miami was not cleared to him so re requested another and that where he got them to say that they saw mm cells.
I continue to see him as the disease progress and not much is done about…he was on wait and see. Now my HB is at 6.5, slight bone pain, palpitation of heart, coughing now and then, slightly troubled kidney and a fairly good functioning liver. A/B ratio is 0.3 I strongly think its mm. I requested more scans but he says it is not necessary .
David I am desperately in need of your help in whatever way possible. We don’t have much choice of onc in the caribbean more so mm specialist. I just start to help myself by taking 8 x 1000gm curcumin daily, it just been a week since i have started. Over the past 4 months i lost 20lbs, now very skiny. I am scared and confused. I know you can imagine what I am like right now.
Your BEST advice …please please David .
Regards
Sim
Hi Sim-
I am sorry to read of your MM diagnosis though you appear to be early stage meaning your prognosis is good. There are several things for you to consider. I will enumerate below to help me cover all the bases.
In general I think your oncologist’s direction to “wait and see” indicates that your original diagnosis was MM at an early stage. Has your oncologist told you your monoclonal protein or “m-spike?” This is an important indicator of your stage. While you may be frustrated with your onc. you don’t want to begin chemotherapy and or radiation until you have to.
1) I agree that a MM specialist is preferable to a general oncologist though studies show that you are ahead of the curve by being early stage and by learning about your health, mm therapies, etc. on your own. Rather than expect your oncologist to offer ideas as you learn more about your MM status you can present issues to him to address.
2) Bone Health- clear MRI and skeletal surveys early on indicated that you were not experiencing any bone involvement. This is great. Current “slight bone pain” indicates that you are beginning to develop bone involvement.
3) Bence-Jones Protein- Bence-Jones protein indicates that you have light chain MM. There is a good chance that your creatinine levels are above normal and therefore your kidney’s are being damaged by your MM.
4) If your hemoglobin (BB) is dropping it is possible that your MM cells are crowding out your red blood cells. This is a common symptom along with kidney damage and bone pain.
I outlined the above assumptions to give you an idea of my thinking and to indicate that you MM has progressed and you should probably begin “induction therapy.” I know you suspect this already- I’m confirming your suspicions.
Curcurmin is an excellent non-toxic MM therapy though your supplementation will be more effective by taking one of several formulas (brands) that studies show are more efficacious.
Most oncologists want to treat, want to give the patient chemo before it is necessary. Your onc. seems to be the reverse. With specific MM diagnostics (monoclonal protein- m-spike) over 3, for example, I would think that your oncologist will begin you on chemotherapy in hopes of brain you back into remission.
In other words, your kidney damage, bone damage, etc. should stop if chemotherapy reduces your MM into remission.
I will email you the integrative therapies guide to introduce you to evidence-based non-toxic therapies that can enhance your chemo while minimizing collateral damage. I will send it to your yahoo account.
Let me know if you have any questions.
Hang in there,
David Emerson
ReplyHi David,
I have diagnosed with stage 3 myeloma, I have some lower back pain, but no other bone pain. The doctor said that my kidneys are backing up. I think it means that my kidneys are not cleansing the fluids properly. I have just gone through an MRI and CAT scan. In the very near future I will have an ECHO and lots of blood tests. I have not been given any results of the blood tests or urine tests that I have done, and I am about to go through some more blood tests this coming week end.
Is this enough infor?
Thanks for listening,
Ron.
From: David Emerson
Sent: Wednesday, November 30, 2016 1:26 PM
To: ronaldmercier@sasktel.net
Subject: Re: Chemo
Hi Ron-
I am sorry to read of your MM diagnosis. Your question about induction chemotherapy, an autologous stem cell transplant (ASCT) and low-dose maintenance therapy depends largely on your stage at diagnosis and any current symptoms such as bone pain/damage, anemia, kidney involvement.
I can be more specific if I know your stage and symptoms at diagnosis.
—
David Emerson
Multiple Myeloma survivor
MM Cancer Coach
Director, Galen Foundation
Hi Ron-
Reduced kidney function (kidneys backing up) is a common symptom of MM. The blood tests you refer to will tell you something called your “M-spike” and your Kappa/Lambda and K/L ratio. And also how much MM is in your blood. The reason for all of the diagnostic testing is to give your oncologist a better idea of your MM and therefore a better idea of therapies such as chemo cocktails and radiation is needed.
The ECHO is to see how your heart is doing. Chemo can be hard on the heart.
All of these tests give you more info to make decisions going forward. Yes, it’s sort of a pain but worth it in the long run. If you talk to me and your onc. you will have two different opinions advising you about what to do.
This is enough info for now. When you get the results of your blood and urine testing then we can talk again if you would like to.
Hang in there,
David Emerson
ReplyHi David,
I am hoping you will be able to give some information as my dad, who is in his 75th year, was just diagnosed today with multiple myeloma.
We listened to all the Dr. had to say such as:
-No cure
-very treatable with radiation & chemotherapy, which is very tolerable he said
-it has affected his spine & hip bones and will be having a full bone X-ray soon
-they scanned him again today & his spine has two tumours just below the base of his neck pressing on his spinal cord.
We spoke of alternative therapies that are more naturally based, such as cannabis oil, he was calm but stated there is no scientific proof that it is helpful.
The Dr.s have him scheduled for radiation in these areas starting tomorrow for 5 days & stated his lungs will have some scarring but it will not affect him.
Then they want to follow up with chemo.
It seems that from an afternoon consultation, then cannabis questions, then he left quickly to go get the radiation oncologist, it was so fast we felt obligated to accept due to the immediate request.
We are just kind of lost in which direction to take at this point. Continue with the radiation until we find a better option? Will the radiation do major damage? We read your story and it seems you have been through these options yourself, but the age is a huge factor.
We understand you are not a doctor but it seems you are one of the most experienced and honest people to approach about the natural end of things. Which is what we truly want to do, although the medical protocol is pointing in the opposite direction.
We would appreciate any help or advice you may have for us as we are still unaware. Thank you for your story it is truly a blessing we found this website.
Best regards,
Lila Ross
ReplyHi Lila-
I am sorry to learn of your dad’s MM diagnosis. Keep in mind that as cancer’s go, myeloma is a very treatable cancer. Let me explain…
– yes, conventional oncology considers MM incurable but I have lived with MM since ’94, in complete remission since ’99
-yes, there are many chemotherapies that are FDA approved to treat MM. It is a stretch for your onc. to say that they are tolerable-
-however I will say that there are many “integrative” therapies that studies have show are cytotoxic (kill) MM while they enhance the efficacy of specific chemos while they reduce the toxicity of that chemotherapy.
– a good example of this is curcumin-
-bone involvement is typical- this is what happened to me as well…
-I disagree with your oncologist about the evidence-based efficacy of cannabis and MM. Or CBD oil as an integrative therapy for Velcade- a MM therapy- Do not expect conventional oncologists to be open to anything that has not be FDA approved. It is illegal for board certified physicians to prescribe any therapy that has NOT been approved by the FDA.
-yes, a recommendation of chemo and radiation for your dad sounds pretty standard-
– to be direct, your dad should consider a combination of therapies for his MM. Both conventional and non-conventional. If your dad has active MM lesions in his spine then local radiation is the fastest method to kill the MM in his neck. Yes, he may experience side effects. But there is no other therapy that will relief his pain in the time frame necessary to prevent further damage.
Lila, there are many therapies that you and your dad need to learn about in an effort to guide his therapy for years to come. My experience has taught me that conventional oncology must be balanced with integrative and complementary therapies. Even nutrition plays a part. I will even encourage your dad to moderately but frequently exercise to keep his bones as healthy as possible.
I am a cancer coach. Fees paid for my services go to supporting PeopleBeatingCancer, a 501c3 nonprofit. Your registration fee, if you choose to become a member, is a tax-deductible donation.
I would like to work with you and your dad. I can help a lot. If you would like to register to cancer coach with me please go to PeopleBeatingCancerCoaching.org. Click “cancer coaching” in the top of the page and then click the blue button.
Let me know if you have any questions. Thanks and hang in there.
David Emerson
MM Survivor, Creator PBC-
–
ReplyHi David
Have been working with my friend of many years (since grade school) who has been suffering with multiple myeloma. He has had both chemo and radiation therapies and a stem cell transplant. He is looking for something else that might make a difference. I’m trying to help him find options. Came across the treatment with antineoplastons and I like what I’m reading about the response rates. Also, disappointed with the FDA and the influence of some big drug companies. Seems if they don’t have the patent, they won’t support even if drug has promise. How are you doing now? Are you on some type of therapy at this time? Thanks for your help.
HI Lee Ann-
I am sorry to learn of your friend’s MM. I (PeopleBeatingCancer) am able to give you and your friend a number of MM therapies- conventional, integrative or alternative. Some I’ve tried, some I’ve read about. The system I follow with cancer patients, survivors and caregivers is to ask/answer questions about your goals, experiences, cancer stage, side effects, etc. and then create a plan for you. I am not a medical doctor I am a long-term cancer survivor who has been living with and studying cancers for over 20 years.
I call this plan “a different kind of second opinion.”
This service is free. It’ what PBC does. Let me know if you are interested.
thanks and hang in there.
David Emerson
ReplyI’d like to communicate with David if possible. I can be reached via email. I had an MM Diagnosis many years ago. I’ve had no treatment. I’m find.
ReplyHi Stephanie,
David here. I am sorry to learn of your MM diagnosis but I am happy to read that you have been in remission for years and that you are doing fine. What would you like to discuss?
David Emerson
ReplyHello: I signed up for and watched David’s webinar last night, Wed, Aug 16. You talked about 13 guides that would be available for purchase at end of Webinar. The guides were never shown during the Webinar. You also mentioned a coupon good for $100 off. I never received a follow-up email so how do I purchase or view these guides? Please advise. Thank you, Mary C
ReplyHi Mary, Thank you for watching the webinar. I’m glad that you found it informative. I am sorry that things got confusing toward the end of the webinar, and that you were unable to access the cancer coaching programs link. I will talk to my Assistant Director to see if we can make the process less rushed. The guides are available by purchasing one of the cancer coaching programs, shown via a link at the end of the webinar. The coupon code for $100 off is: WEBINAR. Please see the link to select and purchase one of the cancer coaching programs below. I have attached the Introductory Guide to this email in case you had difficulty accessing it during the webinar. Thank you again.
David
https://peoplebeatingcancer.org/multiple-myeloma-cancer-coaching-selections/
Reply