How do lifestyle factors and exposure to environmental substances affect our cancer risk?
by Nan_Liz on Fri Mar 05, 2010 11:50 PM
I totally agree, Amy. I suffer from back and leg pain, but I know it is arthritis, not MM. My onc told me that "familiar pain is good, new pain is bad". I know what she was trying to say, but it still stinks!
I haven't always been in the mindset I am now. I have been dealing with this (MGUS) since May of 2005. Instead of looking at life as a ticking time bomb, I reframed it, and decided to enjoy what I have and deal with what life gives me.... good and bad.
Stay strong! NanLiz
by stevem57 on Tue Mar 09, 2010 03:36 AM
Every time I wake up with the sweats or the "flu" which is fairly often, 5 or 6 days a month, I wish I was part of the 97% who don't have MGUS but I do. I have decided to just revel in the good days and go on. I really appreciate the good days, hopefully it won't get any worse. My onc is almost useless to talk to about such things, he's the leading guy is this area and knows much more about it than I do. That drives me crazy. Anyway, what can we do?
Be well - Steve
by morningjava on Sun May 09, 2010 05:39 PM
Happy Mother's day!!!
by MtlK10 on Sun Jul 11, 2010 03:57 AM
I have been diagnosed with MGUS 7 years ago. My Hem-Onc took me through all the standard tests, including the bone marrow biopsy (to Morningjava: it is not as bad as it sounds, usually done on the sternum, apart from the short discomfort caused by the pulling of the marrow sample and a slight, very slight pain, on the point were the test was done, it's done and forgot about quickly. So if it will put your mind at rest, ask you Hem-Onc to perform the test). His conclusion was MGUS. He followed me for a whole 2 years, every 6 months and the level of that protein was stable. I have done an annual follow-up every year since and the level has never varied. After the first two years, my Hem-Onc said: "You are a very nice person, I love chatting with you, but there is no reason for you to come here anymore. You have none of the dreadful diseases that could be associated with MGUS. Dozens of reasons could explain your MGUS, some as benign as allergies or a chronical condition. You will die, like anyone else, but most unlikely from anything connected to MGUS. Go and live your life and enjoy it."
My Hem-Onc is a wise old doctor. The more you search, the more you find, he used to say, including conditions that are in no way connected to each other but then appear to derive from one another. The recent research conducted by the Mayo Clinic, confirmed this. Most of the 70 some conditions said to be associated with MGUS are only coincidental. There is only a handful, about a dozen, conditions that really derive from MGUS. MGUS is prevalent in over 3% of the population so it is highly probable that if you have a condition and they also test you for MGUS, it will be present although in no way connected to your condition.
I know I have osteopenia, a condition that is likely associated with MGUS just as a higher risk of fractures is also associated with MGUS. But the low risk of MGUS turning into something nasty means it is not worth going through treatment. Regular follow-up is sufficient and treatment of whatever other condition is present without intervening on the MGUS is usually all that is justified since the two conditions are likely unrelated. Only in cases where the other condition is one of the dozen or so for which association is now clearly established, is it then worth to treat MGUS. Treatments for MGUS are invasive and are likely to do more damage to your body`s natural defences then MGUS ever will. If you have body pains, numbness, etc., act on those symptoms and forget MGUS.
I agree with Nan Liz. I follow the advice of my Hem-Onc and I live my life fully, not thinking about the MGUS except once a year to ensure the level of the protein has not changed. I welcome every day and the process of aging, after all, aging is the only way to live a long life!
by frankd1100 on Sun Jul 11, 2010 11:52 AM
Good point Nan Liz. I am fortunate to be in the care of an oncology team, doctors and nurses, who finish each appointment with, "o.k., any questions?" Each is incredibly busy, so I'll prepare questions before hand based on my reading and questions that arise in here. But, every meeting my questions are answered and the current treatment plan is reviewed.
For example, I asked why not just keep me on Rev, as it had performed well knocking my mm right on its butt.. I'm infused at my monthly appointments with Zomeda for bone strength and that's been it for about a year. MM is there, it threatens, but I'm lucky for a relative stability with, so far, a slow, upward trend in protein levels.
My oncologist described a number of strategies and, if he were the patient, why and when he would choose X strategy from the array of those available.
MM reacts to whatever touches it, like most of the cells in our bodies. Rev/dex worked for me and I was taken off before my, (emphasis my), configuration of mm figured out how to overcome the drug. Our bet is that Rev/dex or possibly just Rev at first, will work against the next attack. But at some point, mm will figure it out and another drug with different side effects and likely more intrusive on the daily routine of a 'normal' life will be tried.
I agreed to a strategy of maintaining in the arsenal as many weapons as possible so; a) we are not wasting bullets and b) we are extending the efficacy of available drugs in the hope that new and better drugs, or a cure perhaps, will be found in the interim.
To Amy's point, a high level of communication is of the utmost importance. It's also important, in my opinion, to use time in front of busy specialists efficiently because there is another patient waiting her turn in the adjacent exam room. Which is why the suggestions, links, references and ideas of the people in this community are so valuable in preparing for the next appointment which, by the way, I have on Wednesday.
Hoping for another month without drugs as I'm training for a 150 mile bike ride on August 7th and 8th. Interesting thought from a recent discussion with Liz.... I doubt that at 61 I would be training for such an event if I was not fighting mm. As KC said in a post the other day, we are competing for our lives with this beast.
Everyone in here makes me more stubborn, tougher and determined to beat mm. We're fighters all, right to the very last....
Bless you all,
by Liz99 on Sat Jul 17, 2010 02:39 PM
Hi Nan Liz,
I just enjoyed reading your post so much. You are so positive about everything and just a pleasure to follow.
I love your attitude in this sentence:
I will NOT let this rule my life, stressing out between labs, bone marrow biopsies and x-rays .
Good for you! Have a great summer!
by Nan_Liz on Sat Jul 17, 2010 05:06 PM
Thanks for your supportive note. I have not been on CC recently d/t a family illness. It's amazing how quickly you forget about your own problems when someone you love is sick. My MGUS is on the back burner since my daughter-in-law was diagnosed with acute myelogenous leukemia at age 37 last year. She currently is in the hospital recovering from an umbilical cord stem cell transplant. Please - all of you - keep her in your prayers. My grandchildren are only 2 and 5. They need their Mom home and well.
Liz and Frank I always enjoy your positive, uplifting comments. And dear Amy I hope you are feeling much better with all your health issues.
Love to all
by Liz99 on Sat Jul 17, 2010 09:49 PM
Dear Nan Liz,
I am so sorry to hear about your daughter-in-law. I hope and pray that her transplant will work and that she will be home soon.... and well! (As you said...)
Thank you for sharing your thoughts with us when you have so many other struggles that could be taking your energy.
Blessings on you and your family.
by artsyamerican on Sun Jul 18, 2010 02:32 AM
Oh Nan Liz I am sooo sorry to hear such upsetting news my dear!!! I will pray for her and all on here who fight the beast every day!
As for me...same ole same ole...except a new event...a hernia was found by ct and I now have to have surgery on Friday! EEEeeek. First time under general anethesia! YIKES!
by Liz99 on Tue Jul 20, 2010 05:26 AM
I am so glad you found out that you had a hernia! You will do fine during the surgery.
Now, to tell you the truth I am just trying to reassure you.
I don't know anything! The only surgery I have ever had was to remove a shard of glass that had worked its way into the ball of my foot. After a GP had literally hacked my foot to pieces looking for it, a specialist put me out so they could find it. I felt very rested when I woke up and it was so nice to finally have the glass out of my foot! This is not the same as a hernia, but just think of it as a good way to catch up on your sleep! LOL.
Seriously, I am sure you will have some pain, but it will be so much better than living with the anxiety you have had lately.
Good luck with everything. You are awesome.
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