I’m only halfway through the recording, but this is absolutely the most helpful and informative source of MM knowledge I’ve come across in a long time. Thank you both for your time and energy.

@HealthTreeForMyeloma

Жыл бұрын

Cathy, thank you so much for such a kind comment. I hope the rest of the video was just as beneficial to you. Dr. Wong is amazing!

Great information!!

@HealthTreeForMyeloma

2 ай бұрын

We are glad you found this helpful!

Awesome informative forum. I am being treated at MD Anderson Cancer Center. My oncologist does not offer such information!

21:40 they sound so happy about people getting melanoma 😮

I enjoyed watching this and was given great answers as a Multiple Myeloma patient. I go to Metro Hospital in Cleveland Ohio and what Medicare does not cover the Hospital does, it's called being rated.. I first seen a Dr. Wong, then she left and I was given a CNP, now she is leaving. My next appointment is with an Oncologist Dr. Lan. I'm doing well on Revlimid now for about 1 yr and half. I'm worried should I see a Myeloma specialist ? I don't think my Dr.'s that I see are specialists in this area. I sure wish Dr. Wong on this webinar was near me, she was fantastic! I go to Metro because of the rating I get because it could be to expensive for me. If you know any specialists in my area I would love to know who. Thank you Angie

Thank you for the subject matter!

Great session, very helpful.

@HealthTreeForMyeloma

2 ай бұрын

We are glad you found this helpful!

Very informative. I didn't know Dara only affects the M Spike of Kappa light chains. I was led to believe, it affect both Kappa and Lambda. Thanks.

@Kiara-zm8vm

Ай бұрын

WHAT IS THE HIGHEST KAPPA VALUES YOU HAVE SEEN?

I only had remission for 5 months this last time and in one month my M spike went to 1.7 g/Dl . Does that mean the myeloma is more aggressive cause my last remission lasted for three years

The big thing for me is I get a lot of infections, including MRSA, cellulitis, osteomyelitis, sepsis, etc. it gets really old I just feel like I am getting them constantly. My last remission lasted only five months. Based off my light chain ratio being over 100 and my M spike, jumping up to almost 2.5 during remission that is why they started it back up but I could barely get through treatment without getting infections, and I had sepsis twice during treatment

@no-ze9vx

4 ай бұрын

Heather, please ask your doctor if you need IVIG. This could help with infections. I would also ask them about having you on prophylactics like bactrim or acyclovir which can also help with infections. The infections you are mentioning are severe and life-threatening.

@heatherscancerjourney

4 ай бұрын

@@no-ze9vx thank you . Yes it’s awful and I’m only 47. Booooo I hate it

@Kiara-zm8vm

Ай бұрын

HOW ARE YOU NOW? HOW IS YOUR BLOOD COUNTS? WHAT IS YOUR KAPPA LAMBDA RATIO?

@heatherscancerjourney

Ай бұрын

I am hospitalized right now for my stem cell transplants.

I'm 45 yrs old n since a year I have pain in my back, lateral ribs, sternum with a history of persistent cough for seven months. .but recently the cough is gone I have a lot of dysnoea, fatigue, n lots of pain in both upper arms in the humerous, my labs - I'm anarmic, esr raised to 50, BP is 168/110, my CT scan shows inflammed pancreatic head, normal urine test reports normal...I have lots of bony pain especially in my mind back, sternum, ribs, pain in my right loin n hip, fatigue, anaemia, hypertension n stress...pls let me know what to do im not diagnosed with mm though

@HealthTreeForMyeloma

9 ай бұрын

That sounds really frustrating! Keep visiting different doctors and don't give up! Hopefully they find an accurate diagnosis for you.

@HopeKrakowski-hu8wh

2 ай бұрын

Do you have MM?

@cool-858

2 ай бұрын

@@HopeKrakowski-hu8wh I do not know ....I'm afraid if I have ..what do u suggest

@cool-858

2 ай бұрын

@@HopeKrakowski-hu8wh I do not know ....I'm afraid if I have ..what do u suggest

@cool-858

2 ай бұрын

@@HopeKrakowski-hu8wh I do not know ....I'm afraid if I have ..what do u suggest

I want to learn more about “connect”

@HealthTreeForMyeloma

Жыл бұрын

Wonderful! If you are a myeloma patient or a caregiver, you can sign up for a free profile by visiting www.healthtree.org/myeloma/connect and we have a lot of different groups that might be appealing to you- feel free to join any of them and get posting!

@jackiebruney449

11 ай бұрын

Thank you so much. ❤

Is it true that M Gus doesn’t necessarily turn into multiple myeloma? And what are the numbers on this?

@HopeKrakowski-hu8wh

2 ай бұрын

I had MGUS for 20 years before it has recently progressed into Smoldering Myeloma

Please dumb it down, you’re still talking way over my head. I’m 67 and still don’t understand most of what you explained. Labs and tech terms only mean something to the people in the medical field. How come nobody can put this scary stuff in a street language?

@HealthTreeForMyeloma

9 ай бұрын

Myeloma can be complicated and it can feel overwhelming to keep track of everything. You can call our Patient Experience Team at +1 800 709 1113 (or text them) to get help understanding lab terms and what your specific labs mean.

@laelbellamy2495

7 ай бұрын

Google Dr Durie. He does short explanations that are easier to understand. None of this is necessary for you to know.

@laelbellamy2495

7 ай бұрын

Unless you really want to geek out, which some people do.

@laelbellamy2495

7 ай бұрын

There is a protocol-meaning the MM docs decided all the numbers for progression-and they just compare your numbers against the protocol.

@HopeKrakowski-hu8wh

2 ай бұрын

I agree to look up Dr Durie w/ the IMF. He's the BEST!❤

Can multiple myeloma leave leave your system i mean your body

It would have been better if this Dr. can spoke a bit slower; explained a lot better, and, laughed a lot less!

@jordanfuerst2352

4 ай бұрын

You can slow out down by clicking the gear icon and selecting a slower speed.

Good grief, this doctor is on speed.

@HealthTreeForMyeloma

9 ай бұрын

We thought it was a great and helpful conversation. Are there any specific questions you have about the presentation that we can help answer? You're also welcome to slow down the playback time on KZread if that helps you.

@ElephantsRock19

8 ай бұрын

She is obviously highly intelligent, and she is covering a ton of complicated information in a short amount of time. If she talked any slower, with all this info to go over, this would be a 4 hour video!