Mayo Clinic Connect
Results for search term "#Rare".
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Live viewing will be available the morning of November 19th at mayoclinic.org/behindtheshields as a new News Feed post. When patients need answers for rare, serious and complicated conditions, they turn to Mayo Clinic. Please join us in exploring our transformational work to create the future of health care. [...]
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I know this is an old post but I came across this looking for specifically Psoriasis and lung issues. My father has ILP/ILD - pulmonary fibrosis. I know it's not the same thing but I figured I'd chime in incase it helps you or anyone else. Psoriasis runs [...]
I had sarcoma (undifferentiated pleomorphic spindle cell) between two ribs possibly caused by radiation after a lumpectomy 18 years previously. I recommend going to a sarcoma center like Mayo, MD Anderson, Dana Farber, or MSK. It’s very important to assemble a team for your care with multiple disciplinary backgrounds. It [...]
Hello Lisa, I definitely need to get something done, sooner rather than later,. Of course I would prefer to have this done by somebody with tons of experience...however I have been told these are more rare in adults therefore handled more often in children hospitals. I developped tinnitus a couple [...]
I asked before too and was told the same thing. I was also told it is very rare for this to happen and would be ok. I have found out it happens more than anyone knows. Lots of unreported cases. I had a root canal and gum surgery before they [...]
@anet Hi, I am 65 years old and am also stage 4. In the last 4 years my GFR has ranged from a low of 10 to a high of 17. My CKD is the result of a rare reaction to chemo for pancreatic cancer. Because they [...]
DISCUSSION
Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma. As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft [...]
Hi. I just got biopsy results back indicating angiosarcoma in my left breast probably due to radiation treatment I received for breast cancer 6 years ago when I turned 50. I also had 8 lymph nodes removed back then so I’ve been dealing with lymphedema in that breast. I had [...]
I was given Letrozole and Prolia injections as a cancer prevention after having had breast cancer a second time. I have had a rare side effect of Prolia which is a severe jawbone infection for 6 months. Has anyone experienced that? [...]
I am fairly new to this group. My husband is was diagnosed with poorly differentiated High Grade Neuroendocrine Carcinoma Ki67> 90% in 9/16. As I find myself reviewing various groups like this, I find it hard to distinguish what might apply to my husband and what does not. For those [...]
Isn’t CLL very rare in younger people (I’m 22). How do I approach my doctor about this? I haven’t had another CBC done in three months. [...]
Hi @nancygayle, Welcome to Connect. I know it must be a very painful disease. Did your doctor suggest or have you make any lifestyle changes? The National Organization for Rare Disorders has some information standard and investigational therapies for Buerger's disease. https://rarediseases.org/rare-diseases/buergers-disease/ [...]
I have occurred the same problem I'm 32 years old had my gallbladder removed 2 years ago and it seems like almost instantly after I eat within about 5 to 15 minutes I'm on the toilet explosive diarrhea positive for blood in the stool culture I have seen red blood [...]
Hi @carrie14, I noticed that you wished to post a URL to a web resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to [...]
@keggebraaten I asked my transplant surgeon about this, if my liver could be re-transplanted when I die. He said it is rare but possible. I figure that at this time my liver is only 37 years old and very well taken care of so I would love [...]
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