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Posts (8)

Mon, Feb 4 11:09am · Best Ways to Prevent Nausea from Cancer Treatment in Cancer Education Center

The gold standard, in my opinion, for eliminating nausea is Zofran. I have probably felt nauseas 300 times, and all 300 times, Zofran quickly eliminated the nausea and I never threw up. I don't know if it's safe for women who are pregnant, but I'm a male. I can't say enough about Zofran, also known as Ondansetron. You put it on your tongue, and without drinking any fluid, just swallow it.

Mon, Feb 4 11:03am · Humor as a Coping Tool in Just Want to Talk

When I was in college, I thought that everything was funny, in an absurdist way. Now that I am 60, I don't find anything funny. At night, I tell my wife, "Let's watch a movie, but I only want to watch comedies." But there are actually not that many comedies produced by Hollywood. When I was younger, I did open-mic stand-up in restaurants and nightclubs. So, if Hollywood can't produce enough comedies that are truly funny, I'm going to have to create my own.
I'll put the first one on YouTube soon. I can't guarantee that it will make anyone, including myself, laugh. But it will be completely absurdist, that's for sure!

Sun, Feb 3 6:53pm · Tinnitus and brain tumor in Brain Tumor

The types of chemotherapy I had are not supposed to cause Tinnitus. From what I've read, there are other types that do cause it, and it is because the chemo gets in to the bloodstream and then in to the fluid that the stereocilia in the cochlea are "bathed in." This permanently damages the stereocilia (inner ear hairs). I'm not blaming my doctors for anything: the chemo saved my life, at least for now. But I know of other Mayo patients who had the same thing occur, although I do not know specifically what types of chemo they were given.

Sun, Feb 3 6:53pm · Tinnitus and brain tumor in Brain Tumor

I always had mild Tinnitus, but I think that when I received chemotherapy, it caused my Tinnitus to become permanently severe. All the time.

Sun, Feb 3 3:28pm · I just need answers. in Just Want to Talk

Sheila, I am a Mayo patient. I wish I could help you.

I have two questions for now:
how does weight-loss surgery cause a loss of sight?

A doctor (not at Mayo) once told me, "A patient has to be an advocate for their own health." I assume he meant that the patient has to tell each doctor exactly how the patient feels, and what the patient wants, because doctors can't guess what is on a patient's mind.

Also, doctors are hesitant to give out much pain medication, because they are either afraid that patients will become addicted to the pain medication, or because they mistakenly think the patient has nothing wrong with them, and instead is a drug addict.

So they often won't do it unless the patient makes sure that
everyone treating them knows EXACT:LY what they have been diagnosed with, reads their ENTIRE medical record, starts to understand just how RELENTLESS their pain is, and how THE PATIENT'S LIFE depends on getting relief from the pain.

You may have to write and call and send messages to your doctors over and over and make sure that everyone who sees you gets the message, that YOUR LIFE DEPENDS ON GETTING ENOUGH RELIEF.

Is your pain making you suicidal? If you are, tell them!

Sun, Feb 3 2:29pm · Is there a live chat room on here, or elsewhere, for Mayo patients? in Just Want to Talk

Thanks for responding. If there were a lot of patients on connect.MayoClinic, then being able to talk live with other patients would help
patients not feel so alone, whether they were still in the hospital, or at home. However, it takes a very large membership for there to be at least two
patients online at all times available to talk to each other. I don't know if connect.MayoClinic enables us to talk to other patients at other hospitals, or just
Mayo patients in Rochester, Jacksonville, and Scottsdale. It might be that the only way to keep a live chat room going 24/7 would be to enable all hospitals world-wide to join Mayo Clinic Connect. That would have advantages and disadvantages.

It looks like Mayo has Volunteer Mentors. I don't know how many of them there are, but if there was a live chat room, maybe the Volunteer Mentors could sign up on a schedule so that there would always be at least one online to chat with, 24 hours-a-day. Just an idea. I'm currently in remission with CLL, and at home. I feel that only a small percentage of Mayo patients even know that Mayo Clinic Connect exists. I just happened to stumble upon it, probably because
I spend hours-a-day on the internet. I'm a true 🙂 internet addict.

Jan 20, 2018 · CLL in Blood Cancers & Disorders

Hi, it’s January 18, 2018. Are you still alive, Dougmann? I hope so! If so, how high did your WBC get?

As of today, my CLL is still in remission. Mayo is giving me monthly immuneglobulin infusions and I have been taking a couple of antibiotics for over 6 months which may help.
However, I have a bad cold that is getting worse by the day and Rochester is very cold. If there are any nurses or physicians out there, is my immune system going to be able to reverse things?

Aug 31, 2017 · CLL in Blood Cancers & Disorders

I have CLL. I had 5 chemo treatments which ended 13 months-ago, and so far, I’m still in remission. Has anyone else here been in remission from
CLL? Thanks.