1. < Blood Cancers & Disorders

CLL: How do you evaluate well-meaning tips from friends?

Posted by joeeduffy @joeeduffy, Feb 22 9:01am

Me again.

An old friend of mine who is very into holistic therapies and such sent me an article about Rick Simpson Oil. Has anyone heard of or tried this?

https://www.webmd.com/cancer/rick-simpson-oil-for-cancer-overview

Just curious as we will do whatever we need to.

Thanks in advance.

Joee

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rubles | @rubles | Mar 2 7:59am
In reply to @catherine1290 "This may be off topic but I can't find any discussion group that fits. I want..." + (show)
@catherine1290

This may be off topic but I can't find any discussion group that fits. I want advice on osteoporosis treatments. I was diagnosed with osteoporosis 2 years ago and have been taking Prolia ever since. 2 weeks ago I fell and broke my arm. Minimal displaced fracture of distal radius. Ortho told me to stop Prolia and casted my arm. I need new treatment for osteoporosis. My friend said she took Reclast for two years and her recent Dexa scan now shows osteopenia. Big improvement! What experience has everyone else had with this?

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The reclast helped? Can anyone tell me what type of doctor to see for osteoporosis? I'm shuffled around by my doctors and I'm not receiving help. Doctors tell me I'm too complicated because of many medical problems but my bones are most important to me right now. Thank you

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Mar 2 8:11am
In reply to @rubles "The reclast helped? Can anyone tell me what type of doctor to see for osteoporosis? I'm..." + (show)
@rubles

The reclast helped? Can anyone tell me what type of doctor to see for osteoporosis? I'm shuffled around by my doctors and I'm not receiving help. Doctors tell me I'm too complicated because of many medical problems but my bones are most important to me right now. Thank you

Jump to this post

Hi @rubles. To keep this discussion about CLL, I’m going to nudge you and @catherine1290 over to this group:

Questions about Reclast for Osteoporisis:
https://connect.mayoclinic.org/discussion/my-endocrinologist-has-recently-recommended-reclast-for-my-osteoporosis-i-have-tmjd/
This way you can join in the conversation with other members who have Osteoporisis and are taking Reclast. There are other discussion as well. Just type in Osteoporisis in the search window on the top of the page and voila! You’ll see a huge menu of replies.
There’s a dedicated group just for Osteoporisis. This link will take you to all of the discussions:
https://connect.mayoclinic.org/group/osteoporosis/

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kayabbott | @kayabbott | Mar 2 8:51am
In reply to @catherine1290 "This may be off topic but I can't find any discussion group that fits. I want..." + (show)
@catherine1290

This may be off topic but I can't find any discussion group that fits. I want advice on osteoporosis treatments. I was diagnosed with osteoporosis 2 years ago and have been taking Prolia ever since. 2 weeks ago I fell and broke my arm. Minimal displaced fracture of distal radius. Ortho told me to stop Prolia and casted my arm. I need new treatment for osteoporosis. My friend said she took Reclast for two years and her recent Dexa scan now shows osteopenia. Big improvement! What experience has everyone else had with this?

Jump to this post

I've had Reclast infusions 2x (about 2 years apart) for minor osteoporosis and the Dexa scans did show minor increase in bone density. A friend takes Reclast pills for severe osteoporosis, which helps but had the side effect that she lost smell and taste. It isn't without side effects, so check those before considering it. Resistance weight training and other weight bearing exercise is good for bone/muscle growth as well.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Mar 2 9:10am
In reply to @kayabbott "I've had Reclast infusions 2x (about 2 years apart) for minor osteoporosis and the Dexa scans..." + (show)
@kayabbott

I've had Reclast infusions 2x (about 2 years apart) for minor osteoporosis and the Dexa scans did show minor increase in bone density. A friend takes Reclast pills for severe osteoporosis, which helps but had the side effect that she lost smell and taste. It isn't without side effects, so check those before considering it. Resistance weight training and other weight bearing exercise is good for bone/muscle growth as well.

Jump to this post

Hi @kayabbott. I’m going nudge you over to this discussion in the Osteoporosis Support group to meet up with @catherine1290 and @rubles and others who would like to share their experiences about Reclast. This way we can keep this CLL discussion on course. I know, it’s like sitting around a table chatting and we get off track. 😉

Questions about Reclast for Osteoporisis:
https://connect.mayoclinic.org/discussion/my-endocrinologist-has-recently-recommended-reclast-for-my-osteoporosis-i-have-tmjd/

REPLY
2 replies
kayabbott | @kayabbott | Mar 2 9:17am
In reply to @loribmt "Hi @kayabbott. I’m going nudge you over to this discussion in the Osteoporosis Support group to..." + (show)
@loribmt

Hi @kayabbott. I’m going nudge you over to this discussion in the Osteoporosis Support group to meet up with @catherine1290 and @rubles and others who would like to share their experiences about Reclast. This way we can keep this CLL discussion on course. I know, it’s like sitting around a table chatting and we get off track. 😉

Questions about Reclast for Osteoporisis:
https://connect.mayoclinic.org/discussion/my-endocrinologist-has-recently-recommended-reclast-for-my-osteoporosis-i-have-tmjd/

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Will do. My osteoporosis is minimal but I'd be glad to add input to the Reclast group.

REPLY
1 reply
rubles | @rubles | Mar 2 11:04am
In reply to @loribmt "Hi @kayabbott. I’m going nudge you over to this discussion in the Osteoporosis Support group to..." + (show)
@loribmt

Hi @kayabbott. I’m going nudge you over to this discussion in the Osteoporosis Support group to meet up with @catherine1290 and @rubles and others who would like to share their experiences about Reclast. This way we can keep this CLL discussion on course. I know, it’s like sitting around a table chatting and we get off track. 😉

Questions about Reclast for Osteoporisis:
https://connect.mayoclinic.org/discussion/my-endocrinologist-has-recently-recommended-reclast-for-my-osteoporosis-i-have-tmjd/

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Sounds good. I'll do my best as I have trouble with my phone and technical, etc. I hope that made sense. Thank you and hope I'll be able to connect.
.

REPLY
rubles | @rubles | Mar 2 11:07am
In reply to @kayabbott "Will do. My osteoporosis is minimal but I'd be glad to add input to the Reclast..." + (show)
@kayabbott

Will do. My osteoporosis is minimal but I'd be glad to add input to the Reclast group.

Jump to this post

I'm sorry but I'm having trouble with the website and I think related to sign in or? I'll try again but it will take me awhile. I really appreciate your kindness/help.

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1 reply
kayabbott | @kayabbott | Mar 2 11:18am
In reply to @rubles "I'm sorry but I'm having trouble with the website and I think related to sign in..." + (show)
@rubles

I'm sorry but I'm having trouble with the website and I think related to sign in or? I'll try again but it will take me awhile. I really appreciate your kindness/help.

Jump to this post

Hi rubles, I think that @loribmt is recommending to link you more directly to the osteoporosis/Reclast group. Just click on the below link for more questions/answers.
https://connect.mayoclinic.org/discussion/my-endocrinologist-has-recently-recommended-reclast-for-my-osteoporosis-i-have-tmjd/

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Mar 2 1:05pm
In reply to @rubles "OK" + (show)
@rubles

OK

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Hi @rubles! @kayabbott was spot on! I wanted to make sure you all found the Osteoporosis group where you’ll meet more members who can share their experiences with you about Reclast (and other meds for bone replacement) I could have been a little more clear on my directions…sometimes my fingers get ahead of my brain! 😅 Sorry about that!

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