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Post by wallycat on Feb 4, 2021 13:53:53 GMT -5
We are getting another panel of labs and a 24 hour urine collection to see if it remains pre-cancer or full blown ick. I feel badly DH has to worry about me now.
Like I don't have enough crap to deal with. ugh. Just venting here.
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Post by PattiA on Feb 4, 2021 17:58:48 GMT -5
:-(
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Post by mcgee on Feb 4, 2021 20:32:34 GMT -5
I’m so sorry. Sending positive vibes.
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Post by Catbatty on Feb 5, 2021 0:30:40 GMT -5
Our poor brave friend. What happened? Is this planned testing or has something new happened? When will you do the tests? When results come back? We will be thinking of you and hoping you will find a good relief from this soon. HUGS, HUGS!!!
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Post by wallycat on Feb 5, 2021 10:20:37 GMT -5
Incidental finding on annual labs had my onco concerned, so she ordered a few panels and then a few more....the two new ones are being sent to seattle.
MGUS is a pre-cancerous blood disorder and sometimes it just hangs out and does nothing; other times it quickly turns to multiple Myeloma. So these tests tell us where I am .....
Appreciate all the kind words and thoughts.
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Post by beth on Feb 7, 2021 23:41:02 GMT -5
I vote for just hanging and doing nothing. If that is what it is. Hoping the best for you.
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Post by karenw on Feb 8, 2021 19:12:12 GMT -5
Wallycat,
i feel your pain and i trully hope it all turns out to be nothing for you and DH. I went through this several years ago. Routine blood work set off some red flags and my primary MD dug further and boom....dx of MGUS. I went to see the oncologist who followed me every 3,6, and then 9 months for awhile. I had the kappa chain in excess which is supposedly the one that is more likely to become a myeloproliferative disease like multiple myeloma. I was lucky. In my case, it just hung out and then disappeared. I have not had to see the oncologist or had any lab abnormalities in several years now. At the time, it was very scary, though. {{{Wallycat and DH}}}
Karen
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Post by wallycat on Feb 8, 2021 22:13:59 GMT -5
I love you guys. Karen, I cannot tell you how much your post means to me.
I could post some of my crap, but it is what it is...I've been suspicious of Hashimoto's thyroiditis (Lambda into gamma and elevated IGG)...but I also had a Shingrix shot right when some of this started happening.
We're waiting on the 24 hour pee collection results....then decide if bone marrow is required.
Again, Karen, you cannot imagine how wonderful (and I am also sorry you went through this...I've lost 8 pounds in 4 days from the stress. NOT the diet I prefer) that you posted what you went through . You're a doc so you probably know more of the icky things that stuff can be than dr. google is helping me with, LOL. I see my onco on Monday (DH and I are sharing his appointment).
Dread is an understatement.
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Post by karenw on Feb 9, 2021 19:50:23 GMT -5
Wallycat, I'll keep you in my prayers that everything remains boring for you with this diagnosis. Yes, Dr. Google is dangerous for all of us....even physicians. Since my specialty is anesthesiology, a lot of stuff like oncology etc.... I have not reviewed since medical school days, so even us MD's become just as ignorant/scared as they typical non medical patient. And we are probably worse.....we know just enough to get us into trouble or worrying, but not enough to answer questions. MGUS is typically found by accident as in your case (and mine). And there is a low percentage of cases that do go on to full blown blood cell cancers so I hope you stay in the majority!
Karen
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Post by wallycat on Feb 10, 2021 11:15:04 GMT -5
You are quite right.
I'm curious if you took any herbs or supplements that finally brought all your numbers back into normal, and remain so.
Are you still considered MGUS or not?
Thank you again!
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applecrisp1
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Post by applecrisp1 on Feb 10, 2021 14:56:17 GMT -5
Wallycat,
I just saw this thread. Sending you and DH a boat load of good vibes your way. Thinking of you!
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Post by karenw on Feb 10, 2021 19:48:26 GMT -5
Wallycat,
To answer your question-I did not take any herbs or suplements beyond what the oncologist had me on nor do anything different. When they did my work up, my copper and zinc levels were low so I went on those. And to be honest, I took the copper and zinc for well over a year with increasing dosages and my levels NEVER changed!! I have stopped taking them. I am NOT considered MGUS anymore but it can re-cur so they do watch me every year when my primary M.D. runs my labs.
Karen
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Post by wallycat on Feb 10, 2021 20:15:37 GMT -5
Thank you for the reply. Wow; I don't get checked for any of that stuff....
On a good note, my pee labs showed all in normal range....so I wait.
Thank you again for sharing your story with me, Karenw.
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Post by wallycat on Feb 11, 2021 13:23:04 GMT -5
More urine info and isn't looking good. Sigh.
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Post by karenw on Feb 11, 2021 20:19:53 GMT -5
{{{Wallycat}}} Hang in there!
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Post by wallycat on Feb 16, 2021 13:07:45 GMT -5
Right now, I am MGUS (pre-cancer). She wants a base line bone marrow MRI....dread is an understatement. Not the procedure; the concern for results. We'll repeat all the labs in May and see what happens--just like you, Karen, 3 month followup. She said it could just hang out like this for years or decades, spontaneously disappear, or go on to be myeloma. Like having breast cancer isn't the sword of Damocles already. Life...whatchagonnado. I'm hopeful nothing untoward rears its ugly head.
And today, we are taking our cat to the vet. ALWAYS something. UGH!!!
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Post by karenw on Feb 16, 2021 20:11:43 GMT -5
I'll keep you in my prayers Wallycat!!! I know even when it is just "hanging out" you sometimes feel like you are a walking time bomb going through the daily motions (I felt that way at time!) so I hope it does just go away for you too. But as long as it just hangs out, that is still better than the other alternatives. And just keep reminding yourself, that the percentage likelihood of it becoming something bad is VERY low!
{{WALLYCAT}}
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Post by beth on Feb 17, 2021 1:09:38 GMT -5
Hoping for the best for you, Wallycat. Mind, body and spirit have a remarkable ability to cope and to heal if we let them. Stay positive and let them....
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Post by PattiA on Feb 17, 2021 7:00:36 GMT -5
wallycat, you continue to be in my thoughts.
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Post by wallycat on Feb 18, 2021 14:31:59 GMT -5
Thank you all so much for being my little virtual community and supporting me through this. It truly means a lot.
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Post by Catbatty on Feb 19, 2021 0:02:02 GMT -5
Aw, you sweetie, Wallycat. Share with us anytime you want to. We are all thinking about you and your DH! The frustration and fear for BOTH of you must be awful and so hard. Please let us know how it is going as the test results come in and talks with docs. When do you do the MRI and how is that kind they want you to do different than the kind I had searching for a tumor in my saliva gland (that turned out to be benign and I had it removed). I guessed that all MRI's are the same, but perhaps that's not so. And you said it's not the procedure, it's waiting for the outcome that causes the anxiousness. I can sure understand why. When will you know? We are there with you. HUGS HUGS HUGS!!!
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Post by lantana on Feb 19, 2021 19:39:35 GMT -5
Hi Wallycat, I just read this conversation. Wishing you peace and patience as you learn more. I am hoping for good news and kind people to share it with you.
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Post by wallycat on Feb 26, 2021 15:28:01 GMT -5
Ultrasound for thyroid scheduled march 2nd and the MRi (two hours!!) on the 17th. I'm convinced they'll find icky stuff...but not knowing won't make it go away.
Thank you again for all your support.
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Post by PattiA on Feb 26, 2021 15:31:21 GMT -5
Well then we will have to be the optimistic ones for you. Deal?
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Post by beth on Feb 27, 2021 16:25:44 GMT -5
Agreed.
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Post by wallycat on Mar 5, 2021 11:24:45 GMT -5
ultrasound shows small nodules on both sides of thyroid and "they think" noncancerous.
Insurance is battling approval of MRI, so that may or may not happen......
Thank you for your positive wishes.
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Post by Cher on Mar 5, 2021 15:38:49 GMT -5
((Wallycat))
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Post by karenw on Mar 5, 2021 19:26:40 GMT -5
I hate insurance companies....where do they get off playing doctor!!?? My husband does thyroid biopsies every week in his practice so if that is the route your doctor wants you to take, it is a simple fairly painless procedure. And this may be totally unrelated to the MGUS diagnosis. Still praying for you, Wallycat.
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Post by wallycat on Mar 5, 2021 22:24:42 GMT -5
My wonderful onco petitioned the insurance and they approved the MRI. A mixed blessing...want to do it but hate thinking of the result outcomes. Less than 48 hours. Impressed. Right now, I think my thyroid is on the backburner. I had read that MGUS dx can actually be caused by thyroid lymphoma (usually self contained if caught early) which is why I wanted more detail on the thyroid ultrasound. Being a cancer "survivor" I know only too well that you can't know what something is unless it is in a petri dish but since 95% of thyroid nodules are b-9, the odds are it is a watch and wait on those.
Appreciate all your comments.
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Post by karenw on Mar 6, 2021 19:34:44 GMT -5
I hear you Wallycat! You want to know but the expression "ignorance is bliss" was invented for a reason. I had another cancer scare late last year and it was a similar situation....they would not know anything unless they took the suspicious lesion out so i had to have a uterine surgery where they did some random biopsies and excised the lesion. All came back benign thank G-d but at the time....SCARY!!! Ahh....aging can sometimes SUCK! Hang in there!! {{WALLYCAT}}
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