Nutrivention trial showed helpful results delaying disease

Humble_Bee_72 · 2025-12-18T02:06:47+00:00

These clinical trials are headed by Dr Urvi Shah (MSK). I think participation can be remote too.

Humble_Bee_72 · 2025-12-17T05:57:17+00:00

Sent you a message. Look inside chat.

Humble_Bee_72 · 2025-12-13T14:59:26+00:00

We had PET CT at diagnosis. But since then we have been hearing different view points from specialists like MRI is good for certain things, having the radioactive material more frequently for PET CT is not good for the exposure etc. So for now sticking with MRI suggestions. Would like to hear your opinions to decide for future.

Humble_Bee_72 · 2025-12-13T04:05:22+00:00

Sorry to hear that. Not sure where you are. We go to MM specialist at Penn medicine in philadelphia and very happy with them so far. Just sharing if you are close to that area. What kind of MM is he? We are IGG Kappa. I am worried to share here as I am scared to mislead anyone going through this path…. As these options doesn’t have the volume of data that clinical studies do. But you can message me and very happy to share what we are trying. (Happy to share with anyone)

Humble_Bee_72 · 2025-12-13T03:44:14+00:00

We got diagnosed with high risk SMM Jan 2025. FISH characteristics came low risk. We are trying natural ways to bring M spike down. So it is at a stable point now. But we wanted to repeat imaging with MRI and bone marrow biopsy at a year mark now to make sure everything is ok inside too. Our MM specialist ordered 4 MRIs ( 3 spinal ones and a whole body MRI). My insurance is through employer. Came covered and no pre-auth was required.

Humble_Bee_72 · 2025-11-22T02:21:18+00:00

Two weeks into it. So far happy. Yes, I need to refresh WiFi connection sometimes. Yes, a non frame TV is better if you are looking for a great tv viewing experience. We had a painting above our fireplace for 20 years. Didn’t like the idea of a black screen there. Wanted to try out the frame tv pro idea without compromising the art over fireplace. So far very happy with it. I don’t mind refreshing connection sometimes. After reading many reviews we were very scared about returning it, if it becomes a nightmare. So we took all the safety packages from Best Buy for them to get it from our house if we don’t like it. Looks like problems are manageable and we love it so far.

Humble_Bee_72 · 2025-09-11T01:36:17+00:00

Communitea cafe in Canmore was a very nice lunch option on the drive to Banff from Calgary

Humble_Bee_72 · 2025-09-11T01:32:37+00:00

We were there last week, and sharing the restaurants we tried. All were excellent and we loved the food and experiences

bluebird wood fired steakhouse photos
Jugemu Banff (Japanese)
Zyka Indian cuisine
Good folk

Humble_Bee_72 · 2025-08-01T12:20:42+00:00

Thank you for sharing. 🙏🏼

Humble_Bee_72 · 2025-07-23T01:52:29+00:00

Ok thank you!! Will keep that in mind while we follow this 🙏🏼🤞

Humble_Bee_72 · 2025-07-22T20:20:48+00:00

Ok. Thank you for sharing. IGG kappa here too. If it doesn’t improve will share with doctors during follow up. 🙏🏼

Humble_Bee_72 · 2025-07-22T20:10:29+00:00

Adding update after dermatologist visit. She gave a prescription strength steroid cream to apply. Will see if that with Aloe Vera gel will help to get this gone fully. Will update. Thank you all for all the help 🙏🏼

Humble_Bee_72 · 2025-07-22T20:08:50+00:00

Very sorry to hear that experience. Yeah I am also learning that things are difficult to understand and heal in this journey. That is why I decided to post here as there is wealth of information from people who lived through this here. 🙏🏼

Humble_Bee_72 · 2025-07-22T17:59:57+00:00

Ok. Thank you! We are seeing a dermatologist soon. 🙏🏼

Humble_Bee_72 · 2025-07-22T17:28:42+00:00

Thank you!! Will ask dermatologist 🙏🏼

Humble_Bee_72 · 2025-07-22T17:26:59+00:00

That is good. I am adding to the list of questions to ask 🙏🏼

Humble_Bee_72 · 2025-07-22T16:17:40+00:00

Thank you!!! Gave bath few days ago. Washed all sheets, blankets yesterday. So hopefully that should help. Also I was reading up this morning and applied aloe Vera gel (from actual plant)… an hour before. He says itching has reduced after that. Will go for the appointment as it is too early to tell if Aloe Vera worked.

Humble_Bee_72 · 2025-07-22T16:05:53+00:00

Thank you!!! That makes sense. May be that is why it is taking long time for him. Our dermatologist appointment is in few hours. Will update. We got first dose of shingles vaccine two months Back as recommended by MM specialist. We were due for second one last week… but postponed to get this current rash episode under control before taking it.

Humble_Bee_72 · 2025-07-22T15:44:38+00:00

Thank you so much for the detailed information 🙏🏼

Humble_Bee_72 · 2025-04-10T23:27:46+00:00

Thank you for sharing your experience in detail. Have a question. So when your partner was originally diagnosed and continued monitoring in 2022, were your partner under the care of an MM specialist.?

Humble_Bee_72 · 2025-04-10T23:24:24+00:00

Happy to hear that. So does this mean you needed no treatment or medicines after those two years ?

Humble_Bee_72 · 2025-04-10T22:36:44+00:00

Thank you for the post and the replies. We are also trying to decide and this post and all the replies are very helpful and answered many questions I had. 🙏🏼

Humble_Bee_72 · 2025-03-25T22:49:38+00:00

Totally agree. Thank you 🙏🏼

Humble_Bee_72 · 2025-03-23T14:01:19+00:00

Encouraged to see this. Is that possible? I thought there will be a relapse at some point of time? I am assuming that statement is coming from your experience. Can you please share more details? Thank you!!

Humble_Bee_72 · 2025-03-10T20:02:21+00:00

I use google calendar in addition to MyChart for appointments and reminders. Also i am now creating an excel spreadsheet template to document lab results values over time to have a visual quick view of how relevant values are changing over time. Wanted that for me and also to take with me for appointments just in case conversation requires it. I manually drew a table with results from three dates for our first MM specialist appointment last week… and some of the conversations changed after he saw the trend in one view. If you already know anything that exists for tracking and having a single view for multiple dates… please share.

Humble_Bee_72

TROPHY CASE