Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (101)

4 days ago · MGUS and osteoporosis? in Bones, Joints & Muscles

I have MGUS and osteoporosis. I was on Actonel, but I stopped them after 6 months, as they made me super achy and rashes. Within 15 minutes of my walk, I was limping from pain in my hips, legs and back. Dr was originally going to do injections, but decided to go easy first with pills…glad I didn't take injections. So I'm on nothing…I eat lots of dark greens, and broccoli, sometimes I make a bone broth, and I take Calcium supplements. I'm due for a bone density in a couple of months…hopefully I'm not any worse.

4 days ago · MGUS at young age in Blood Cancers & Disorders

I have MGUS…mine shows slightly in bloodwork with a small M spike. I read sometimes if the cell is small, it'll pass into urine, and not be detected in the blood. I have not had a urine(Bence Jones) test, but mine shows Igg kappa in blood. I also have very low IGM, which are white cells that fight infection. My oncologist has me scheduled for a bone marrow test this Friday, June 14th, YIKES!! Trying not to scared!! I'm a patient at Florida Mayo clinic, so I'm in the best hands. Also, my dr has moved up my appointments to every 3 months. Now we'll see what bone marrow tells…UGHHH!

Sat, Mar 23 2:56pm · Grover's disease in Skin Health

Some of you may remember my severe rashes, I've posted pics last year. Anyway, in regards to this post, I wanted to chime in saying, I happen to have cilantro growing in my herb garden, along with basil and parsley. I looked up nutrients, and seems both basil and cilantro are very similar…especially in the vitamins A, and K. Correct me, if wrong.
So, I'm thinking why not make a nice pesto sauce from basil?? We can always add some cilantro too. After seeing this thread…today, I took a bunch of cilantro from my garden, washed, and removed only the thicker stems…rough chopped it…put it in my favorite little bowl…topped it with fresh ground black pepper, sea salt, and a good dash of my absolute favorite fig balsamic vinegar. WOW!! I buy my balsamic vinegars from MT.DORA…the fig added that tiny sweetness and balanced out the cilantro. I do happen to like cilantro on its own. Those of you that may like a little cancel to the bitterness, may really like a fig balsamic. I also keep on hand, strawberry balsamic. But, please let me know what you think about basil for skin disorders.

Sat, Feb 23 6:35am · Multiple Myeloma- I have smoldering Myeloma. Does anyone have this diagnosis? in Blood Cancers & Disorders

@beepoop …I also have been diagnosed with MGUS, about 2 years ago. Also Igg kappa. It seems to have stayed the same except for fluctuations in kappa/lambda ratio. Of course no treatment at these levels. What I'm surprised about your diagnosis is that many years have passed until it became smoldering. I see it can spike after a long time?? I always say, I'm gonna quit testing since it's going on close to 3 years of being stable. Well, I guess not!
I do have severe osteoporosis, and experience sudden tiredness and aches. But I'm rather active..just hits out of the blue. I also get widespread rashes, that drive me insane and cause awful side effects. Mayo continues to do biopsies and monitor everything.
I try best to eat lots of dark greens and broccoli to keep blood healthy. If my iron levels should drop(not sure if yours did) I would increase iron rich foods with vitamin C, or any citrus for better absorption. They say MGUS, or Smoldering is like a time bomb…but I say, no worries, cross that bridge if we get there. Yes, I heard treatment is promising. My best to you!

Fri, Feb 1 4:54pm · Hemachromatosis... in Blood Cancers & Disorders

Hubby has high iron…its affecting his liver enzymes, and possibly more. Finally dr ordering a hematologist to test further. He had lots of blood work done this past week, we wait on results. Hoping its hereditary, and will require large blood draws, and nothing more serious. I looked up diet with people that have this disorder and I understand they absorb abnormal amounts of iron from certain foods. Non heme, and heme foods…if anyone knows about this, please talk to me and share your insights.

Fri, Jan 25 7:13am · Cancerous spot not healing?? in Cancer

While at Mayo being examined for my rashes, a cancerous nickel size spot was removed on my back. It was basil cell, and said to be superficial. Four weeks later, it was nasty looking, with a thick black scab, and red border that spread out. I went to a local dermatologist, and they removed the scab, dr said it looked angry, and I applied ointment and covered it for 14 days. It seemed to heal ok, but its still red, and it hurts radiating out, and itches a bit. Four months later, it’s still bugging me. I went back to local dermatologist, dr said just apply scar ointment. No further biopsy was done. She said she didn’t have an answer as to why it hurts all around, but only that the scar tissue can be uncomfortable. Has anyone ever experienced after effects like this, for so long?? Before it was removed, I never even knew it was there.

Fri, Jan 25 6:59am · Grover's disease in Skin Health

I was prescribed steroid cream applied then wet wraps. I sometimes get it all over my body, so after cream applied, I wet a cotton t shirt, and leggings, wring out until just damp, and stay in them for 1 hour..3x daily. ..Dr prescribed. Not the most comfortable, but very relieving. I wear my husband's big terry robe over, as the wet wraps get cold. Also take Hydroxyzine and allergy pills when needed. My drs from Mayo clinic are adamant about gentle skincare, using only Vanicream bar soap, and body cream. Absolutely No hot showers. Diet is not my trigger point. In my case, its possibly blood condition related. Heat, and sweating may trigger an outbreak for me…yet sometimes it doesn't. I get more of a horribly itchy, blistering rash. Last full outbreak was soooo widespread, I felt sick with chills and exhaustion. My meds do help with symptoms, not a cure. Hope you get help!!!

Dec 30, 2018 · Holiday Feelings: Are They Merry or Stressful? in Just Want to Talk

The only thing I enjoy about holidays is first, the meaning…
Secondly, having the whole family together is a blessing. What bugs me is feeling forced to do certain things because it's a special day. Last Easter my very special dog was on his last days with bone cancer. Everyone assumed I was supposed to go about the usual BIG family dinner, all the fuss and cooking, cleaning etc. I was literally exhausted with uncontrollable emotions and sleepness nights sitting with my buddy, my pal, holding him, comforting him. Finally I just told everyone I'm not doing a thing but staying put right here with him and my husband, who's heart was literally broken. So, no one did anything. I have friends I always invite, all through the year, regardless of holidays, yet never ever ever do we get an invitation, not even to meet someplace out for a quick lunch. Yet I feel so badly not to invite them. I just dont get it…and I'm sorry for all us that feel the holidays stir up emotions. Shouldn't be that way. Personally, I'm thankful my family and I had a lovely Christmas, but I'm glad it's all over. Hubby and I are staying home new years, just us…and God willing, I'll cook us a special meal. All said…let's move on…dont look back, and pray for a healthy, peaceful 2019. Nice people here!!