Badges (1)

About

Member has chosen to not make this information public.

Posts (9)

Sun, Sep 22 12:31pm · Below normal level of Immunoglobulin M in Blood Cancers & Disorders

Immunoglobulin levels below 1000 will make you more susceptible to infections, respiratory and others. Many of us get infusions to combat this, and stayhealthy during treatment.

Mon, Sep 9 11:34am · Cutaneous T Cell Lymphoma in Blood Cancers & Disorders

I think we all need to remember that just because something is rare doesn't mean you don't have it.

Wed, Aug 14 10:55am · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

You need a second opinion from another dentist. Cracks in teeth usually do not show up on X-Rays. Telling you to relax while you sleep to ease up on the pain is ridiculous – it is unconscious – you cannot control the stress in your jaw like that. I used a bite guard (dentist-made) for years, but only really got relief from a new dentist who adjusted my bite by filing down a tooth which was throwing my bite off. She also sent me to jaw therapy with a PT (yes, there really is such a thing), and putting me on a soft diet for 6 weeks to rest my jaw.

Sun, Jul 21 6:33am · New Patient appt in Minn soon for a Meniangioma (possibly 2) and RCC in Brain Tumor

Yikes! I'm so sorry for not only your dx, but for the lack of real care you have gotten in IN. Be encouraged that Mayo should be different. I went 12 years ago for a brain tumor that 2 neurosurgeons in MI said was inoperable. Mayo docs not only were willing/able to operate, but also able to diagnose accurately after operating. I've been symptom free since then. I would strongly encourage you to try and find someone to go with you though. Although there are lots of volunteers around Mayo to help you find things, it is a pretty big, and sometimes scary place.

Sun, Jul 14 1:09pm · CLL - Referral to CLL Specialist in Blood Cancers & Disorders

I sent a message to him on the Mayo message board, and a nurse replied that I should check with other infusion centers in the area. I'm afraid I think this reply demonstrates how Mayo medical personnel (wonderful in many ways) often don't have a grip on what healthcare is like in other parts of the country. Every infusion center I called said my doctor would have to call them – not me. Called my local primary care doc and he is on vacation until next week. No one else in his practice (about 20 docs total) could handle it. So I'm waiting on his return call, hopefully this week.

Sat, Jul 13 6:08pm · CLL - Referral to CLL Specialist in Blood Cancers & Disorders

I have CLL, and have gotten monthly infusions of immunoglobulin (IVIG) for 2 years. This has made a tremendous difference in my health, as prior to these infusions I had continuous respiratory infections. Now my local infusion center tells me there is a shortage of the drug, and they cancelled my infusion. Has anyone else encountered this, and if so, how have you handled it?

Tue, Jun 18 5:52am · Has anyone been diagnosed with a pilocytic astrocytoma as an adult? in Brain Tumor

Hi – brain tumors are very scary! I also have a pilocytic astrocytoma, diagnosed 11 years ago after 3 brain biopsies at Mayo in Rochester. First biopsy diagnosed it as another type of tumor, second was done because symptoms didn't match first biopsy diagnosis. Second biopsy missed tumor altogether. Third (with different neurosurgeon) yielded piolocytic astrocytoma diagnosis, which seemed to fit. So recommendation was just to watch and wait. After 10 years of brain MRIs with decreasing frequency, I was released from neuro, and have been fine, but always nervous (in back of my mind) that symptoms will crop up. Tumor was initially found because I developed accute hydrocephalus, and had to have shunt implanted. I am 68 now, and wish you the best.

Sun, Jun 16 1:17pm · Exercise during chemo in Cancer: Managing Symptoms

I have Chronic Lymphocytic Leukemia, for which I am on a continuing daily dose of a targeted therapy (Imbruvica). One side effect of this drug is muscle spasms, which get me up and jumping around 3-4 times a night. Before this cancer I had several brain surgeries for an unrelated tumor, and those left me with serious balance issues. So I'm looking to improve my balance, fight fatigue, and improve strength.