Must Be Snowing In Hell

Remember the Moffitt doctor that told me I had less than a snowballs chance in hell of acquiring MM????? That my MGUS was NOTHING to worry about??? Well...just two months later....after some post "flu" blood work my A/G ratio is .8 and just found out today that for the first time they I have a 1.0 spike in my urine.

Feeling just a tad bit hostile.

Hugs,

Amy

Dear Amy: I am hoping things will settle down for you. Myself I believe there is a much great chance of MGUS becoming active, than many docs think. So I beieve a pro active stance is one all mgus sufferers should try.

Get on a holistic diet, add immune boosters, liver cleanses and lots of vegies and juice the vegies. There are many out there.

I do understand your anger, I would go and find that person and hand him a sheet and put this heading on it....hmmm When my husband was being treated for prostate cancer last year the young doc was very arrogant. I tried to be peacful and pleasant but one day he said."Patients should never have input into their care"  Well I was polite but I asked him if he was God and what right did he have to offer who lived and who died!!!

My husband did very well and this was all about him not wanting all the medical "stuff" this doc was offereing. Turned out my husband was correct. There is a place for medical and a place for natural. Anyway I am sure you will keep us up to date on what is happing. God Bless and hugs. MMS jan

On 9/11/2009 artsyamerican wrote:

Remember the Moffitt doctor that told me I had less than a snowballs chance in hell of acquiring MM????? That my MGUS was NOTHING to worry about??? Well...just two months later....after some post "flu" blood work my A/G ratio is .8 and just found out today that for the first time they I have a 1.0 spike in my urine.

Feeling just a tad bit hostile.

Hugs,

Amy

Hey Amy,

I'm sorry to hear your bad news. I have been disappointed by many doctors. You are staying on top of things, that's important. I don't blame you for being upset.

Well Amy I have to say we missed you, as your notes were always informative and humorous, but this is NOT the way we wanted to get you  back!  Of course you are feeling hostile, and perhaps not taken seriously and maybe even betrayed.

 As I recall, Steve and I are in the same boat in the MGUS numbers game. Although some of us may be more at risk upon diagnosis in regards to m spike, ratios and cytogenetics... what we have learned along the way is that MGUS must ALWAYS be taken seriously.  That's why they call it "undetermined" or "unknown".

Keep your lovely spirit, get checked regularly by a MM specialist you can trust and keep CC close if you need any support.

NanLiz 

From Anna,

Hi Amy, I'm not trying to make excuses for the Dr. but they are human and make mistakes.  I know though about being upset with doctors.  A couple of years before Dad got sick the Dr. removed a fatty tumor from his back.  He had a new assistant and she threw it away instead of sending it off to be tested.  We have always wondered if that might have told us he had cancer.  

Your friend,

Anna

Amy - I don't know what to say really.  I guess, when you're ready, take a trip out to the wood shed, pick the piece of lumber that fits you best, and lets get to putting a whipping on some myeloma cells.

We're going to turn a spot light on that shadow of yours...we're all in there with you

Doug

Good Morning Amy;

Remember the Moffitt doctor that told me I had less than a snowballs chance in hell of acquiring MM?

If it was winter, I'd suggest you take a snowball into your next appointment and tell the good doc "here's what I think of you're prognosis".

I have a 1.0 spike in my urine.

Time for you to have ALL the tests performed. And keep copies for your records.

Feeling just a tad bit hostile.

Quite understandable! I'm certain you'd rather take Doug's advice and use that piece of kindling on the doctor. Instead, hit him where it hurts: The wallet. One thing these boys understand is the almighty dollar! Tell him you want two other doctors names who are MM specialists as you feel that he is beyond his educational prowess. He'll hem and haw but you hold your ground.

While this is shocking news, you are far from throwing in the towel. Get those tests performed, find a good MM specialist that you feel comfortable with and remain positive. They are very close to caging this beast.

Take care;

Kevin

Hi Amy,

     I am so sorry to see you back on the forum.  I know what you feel like dealing with your doctors .I know it has changed me. I am also glad you have kept after these doctors to get more answers. I will tell you this...I know I would be much sicker then I am if it wasn't for all the great foods. I eat raw garlic when I am getting a infection. Cranberry tablets to build your immune system and the biggest secret is HOT PEPPERS!  I swear by them. I have some kind of hot pepper everyday, I cook with them all day long. It is truly the miracle veggie!  Give it a try

                           Majolica

Hi All - Thank you for your very kind and understanding words. Believe it or not - my oncologist w/ Moffitt (according to the nurse) is not overly concerned about the 1. spike in my urine. He - according to the nurse - believes because the urine was a "spot" urine and not a 24 hour urine that the results were probably inaccurate.  He says I can repeat the test - this time - 24 hr - if it will make me feel better! OMG! Either I am OVER reacting or he is UNDER reacting! This whole thing is crazy.

 What would I do w/o you guys keeping me anchored??

Hugs,

Amy

Thank you Kevin - I love your spunk!!

Hugs,

Amy