About

Member has chosen to not make this information public.

Posts (333)

Apr 4, 2016 · Healthy diets for cancer patients in Cancer: Managing Symptoms

@colleenyoung, @smness thank you both for your information. I look forward to reading the articles. And I will subscribe to the cancer blog too. Since this is all new to me since being diagnosed the first of year. I still in the learning stages.. So again thank you.

Fri, Sep 6 5:35am · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

@vonbaron36 I been on a Watch and Wait since January of 2016. I dont feel or see any swollen lymph nodes. Mine lymph nodes they r waiting r near my Aorta. That is a good sign you could be on watch and wait your whole life. 🙂

@gingerw Hi Ginger, nice to meet you. I been swamped with work and my move. Don't believe you and I have chatted yet.
What made the new doctor diagnose you with lymphoma? I am not familiar with MGUS. Is that a Lymphoma? Now did the Doc say what exact kind of non-hogkins lymphoma you have? There are about 65 different types associated with this disease. You also mention kidney disease. Is that a complication from the MGUS? How is your blood work?

Thu, Sep 5 9:51pm · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

@kittykiernan so sorry to hear. Who diagnosed you with Epstein barre virus? Can you go back to that Dr? Will he help you?

Thu, Sep 5 9:47pm · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

@susanlim I agree but I think it gives them an idea if the disease is stable or becoming aggressive ?

Thu, Sep 5 9:41pm · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

Hi everyone, I have seen now 3 dentists since my last post. I got to tell you all I really despise dentists. The prosthodonist said the crown was not made correctly. I saw her 3 times.. she shaved to tooth down 3 times. The endodontist monitored the tooth and prescribed a rinse sooth the gum line and tooth. He thought the tooth was ok but the crown didn't fit right. The prosthodonist called the original dentist to tell him the tooth was not properly fitted and that he needed to redo the crown. Then that would result in a root canal. So the original dentist I went back to today. He decided to put a seal around the tooth and shave it down even more. Let see now if this works before he yanks it off and remakes the crown? This is complete torture.

Mon, Aug 26 10:36am · Eagle's Syndrome in Ear, Nose & Throat (ENT)

@brooklyngirl That is wonderful the surgery is a success. You Eagles Syndrome must of been very advanced? He is not that advanced yet. He isn't having the nonstop pain. I believe his pain comes and goes.
People with Eagles Syndrome I do know need to keep getting checked cause the styloid can block your throat or worse rupture a blood vessel.
Please keep everyone posted on how are feeling.. Can you get some kind of therapy for the scare tissue? I don't know at all? Have you asked the DR. about that?

Jackie

Fri, Aug 23 3:45pm · Eagle's Syndrome in Ear, Nose & Throat (ENT)

@sann @jchristophersen @clara01 @linda21 @lioness @mommyg33 @jealink @keetee @abby4paige @debdeb12 @de9g @theeaglehasland @alcorreia0123 @empy @brooklyngirl @melb777

I want to thank you all for coming to the this site and sharing all your heartfelt stories.
I have had a busy last few months with my move and work. so I have not had a chance to comment.

I started this feed for Son, and others who was diagnosed with Eagle's Syndrome. I love the fact that so many of you are all helping each other. Your stories are all truly heart wrenching. There is nothing worse than being in pain and Dr's not certain as to what the cause or how to treat you. I feel it is scary to just have them guessing or looking at us like we are crazy. That is exactly how my Son felt for 10 yrs till he was diagnosed.

My son has not gone through any treatments. He has done every natural treatment he can find. Because the few Dr's he saw scared him off of surgery. Told him to hold off as long as he can.

Now what he has done may not work for everyone. So you will still need to consult with your DR's. He has gone on a complete health food eating kick. Limiting any milk products and meats from his diet. He keeps himself very slim. He even started practicing yoga. He feels when he gains weight, he notices this aggravates his eagles syndrome. I know he needs another CT scan to check on the Styloids , and compare to his last set. He has not done that yet, Hoping he does that soon! This way I can give you all an update.

I saw some of you posted a couple of other support groups. https://www.livingwitheagle.org/c/bens-friends and https://www.livingwitheagle.org/. I believe they are both linked together.There is a link on that site to a list of Dr's that people have gone too.

I honestly do hope, you all see at least a few Dr's, to get some good second and third opinions on treatments, My Son saw 3 Dr's. One being at Cleveland Clinic which has been a few years ago now. Cleveland Clinic, at the time did not have a Dr on staff that treated Eagles Syndrome.

I noticed a post by someone, that they now do offer treatment. That is wonderful to know thank you so much for sharing.

My Son saw a Dr. at UF Health Stands Medical in Gainsville and another Dr in Dayton Ohio.
I am praying you all feel some relief soon.
Blessing you all.
Jackie

Wed, Aug 21 3:20pm · Anyone else have Anal cancer? in Colorectal Cancer

@joan19 I can tell you about my friend who had breast cancer about 20 yrs ago and then 10 yrs later she had gotten anal cancer. She had surgery and Chemo for both cancers and it has been about 14 yrs now since the anal cancer. She is doing fine.

They have made excellent advancements since she had her treatments.

I would recommend you speak with several Dr's as to how they would treat this situation. I know she must of saw like 5 DR's from Top Hospitals in Chicago. I believe she ended up going to Northwestern Hospital. They had the most advanced treatment at the time. She was pretty young at the time too 49 yrs old.

But do get several opinions for your best results.

Wishing you the best
Jackie