Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts

Tuesday, March 28, 2017

Cancer Support Community and Clinical Trials & NEW CLINICAL Trial FOR GENETIC Types of Cancer





 Looking for new #cancer options? Join a phase 2 study targeting certain tumor #genes like #NTRK, #ROS1, and #ALK. No chemo & no radiation. Learn more here! http://curec.lk/2nvKNtC 


Friday, October 7, 2016

Fearful that something is very WRONG & not sure what I want t do honestly....

First of all, I want to see who reads this. Some of those if they do, should "respond" to me quickly.

IF they DO NOT, then I know they lie to me about "reading" my blog posts and FB posts etc.


I've lost something like 24 POUNDS for no "real reason" over the past about 8 months. I "chalked" it up to stress of all I went through with my Mom, the Dementia, then the grief and everything that is STILL going on even after her passing away.

Funny how even "family" can be so damned "selfish" once they "think" they are getting a little bit of the "green stuff"... or if they are NOT, and so forth.

Anyway, I've been having severe "night sweats", I mean COLD, shivering, soaking wet to the bone, and all onto my sheets, my blanket and so forth. Those have been going on now for about 2 years off and on... but lately they are much worse.

Then I KNOW I am anemic, and have been, I take B-12 injections monthly BUT my RBC IS not BETTER but WORSE, anytime I have labs drawn.

Then there is the bone weary fatigue. I struggle with severe fatigue, and have always felt it was the Lupus, RA and so forth....

I cannot sleep, the lymph nodes in my neck stay swollen and the Left one under my ear is like a rock, and sore all the time.

THEN, I developed this one "lump" about the size of a LARGE marble on my L. Butt cheek about 6 months ago... rather than go away, now it appears like it is "sunken in" around it, with a bluish tint, almost looking bruised YET it is NOT bruising... I've had NO trauma there and now this past week up and down my outside right thigh, I began to "feel" the little lumps, about 4 or 5 of them...

I've looked and researched, and although we know often these things may mean nothing, YET I fear I may have "Non-Hodgkins" Lymphoma.

The "symptoms fit"... and with my other issues like Lupus, RA, Sjogren's, Raynaud's and so forth, my chances are much greater of having something such as this... I shall say no more for now... and see if anyone reads this....

Thursday, June 9, 2016

"Dare To Dream" Sponored by Cure Click and About "Dreaming" and Clnical Trials



If you are a research volunteer, share your story! Tell others what it was like.
If you don't know, but you're curious, check out the stories of real people like you, helping advance science.


Project D.R.E.A.M. Dedicated to Research Education and Awareness Movement


 

Friday, August 7, 2015

Orencia - CELLULITIS - and other known biologic medications, for RA, Lupus and other Autoimmune Diseases"....

OF course all of us know that "biologics" in total can cause infections, cancer, especially lymphoma, TB, and other some "serious" side effects. But, I NEVER have had "CELLULITIS" before in my life. I "thought" originally this cellulitis on my left thigh (top) was from possibly a sliver of tree bark that I thought happened about 8 weeks ago or so while I was cutting some branches up. But, the more I think about it, the more I "see" that both thighs at that particular place is where I usually take my Orencia Injections. It is so happens, about 3 day ago or so, I noticed a "small" (like possibly pea size) "lump" on my right thigh almost in the same spot. Of course it could be any number of things, but I am beginning to wonder if the injection type of Orencia that I had in that last "box" may have no been contaminated... because having "bacteria" on the skin OR on the needle in itself, can of course cause cellulitis... and the "medication" in itself, can also cause it also. I am almost "overly" cautious when it comes to my weekly injections. I use a couple of alcohol preps, wash my hands first with antibacterial hand soap, then make sure I clean the skin well around and out from where I put the medication. Yet, I am leaning towards the possibility of the "injection" needle in itself as I said above possibly being "contaminated"... anyway, the huge lump is definitely going down now. It is now about the size of a "little smokie" LOL... or I guess the very top portion of my thumb to the first knuckle size approximately. NOW though, after having the severe intestinal issues with the antibiotic I had here, while waiting on the doctor over last weekend to call me in the two for a 2nd round, which is Omnicef, that is the culprit of causing me to have SEVERE problems with not being able to "keep" anything in my digestive tract. I FINALLY thought I had the "gripes" I think as it can also be called, have basically stopped (I pray) BUT I woke up very nauseated this morning. I took some of my meds for it, and thought I would be okay in a bit... but a bit earlier I began to be sick to my stomach and was "throwing up" and all I had at the time in my stomach was some green tea iced... so if it is NOT "ONE" end, it's the other... Gosh I am so sick and tired of being so SICK< SICK< SICK!!!!  Anyway, I am trying to get myself back on schedule with everything, but getting so nauseated this morning put another damper on my schedule returning to whatever "normal" is for me.... If YOU or ANYONE you may have heard talk about getting "CELLULITIS" from "Orencia" or another biologic, please post and let me know... I would like to see if there are others here that may have had the same type of issue...

Tuesday, March 24, 2015

A Bit OF "Personal" Goings ON I wanted to share....

In between all of this, I have not mentioned that I got a call from Mom last night. Her last living sibling, her sister, who is about 3 years younger than Mom, has been battling "terminal" stomach cancer for a long while. Well, my Uncle called Mom and told her that my Aunt now has Hospice coming in all the time. I feel from what he said she does not have much longer. So, this week is so nuts for myself and Mom, that I hope and pray my Aunt Geri makes it till Thursday. They live in Mesquite up by Dallas and it is not far from my Pain Doctor. I have an appt with him on Thursday afternoon. So, our plans are to go up and visit my Aunt for a bit, then go on over to my doctors for my appt. This is a horribly busy week for me, and I am already feeling run down. I had the CT Scan done earlier this morning, and now we shall see what that has to say. I fear it will not "show enough"... which as stupid as this sounds, I hope it DOES show what the heck is causing all of my added pain!!! My pain doctor is going to "up" my medication in my pump, so we need to know where the freaking pain is coming from. I feel it could be from "compression fractures" due to my osteoporosis being so severe. But, I am also having major pain in both hips... and then down the back and sometimes front of my legs, all the way to my heels. So, please keep my Aunt, My Mom and our family in your prayers. This is my Mom's last "close" family member, besides myself and my two kids. So, she has lost my Dad, both her parents, and then her brother and sister in law. I know she is taking this much harder than she lets on. I am worried about her too... she kept repeating herself and asking me the same questions over and over today when I dropped by, so I know she is just upset, plus I feel she may have some "dementia" herself. Both my Grandfather, he had Alzheimer's and my Grandmother had dementia... so it runs in her family... also my daughter and her husband and kids are really going through a tough time right now.... more on the level of a job situation, and has to do with the oil business. Her hubby has worked for this company for 10 years or more... and there is lots going on for them also... so I would really appreciate your positive thoughts our way...

 

 

Of course, everything always is either feast or famine and we don't realize at times when something either keeps us "home" rather than going where we feel we should be, or having to be some place and you never expected that either. I've been waxing and waning now for months with this "new" type of almost at times unbearable pain. But, this is my hips, my lower back, then down my legs almost into my heels. It seems to be worse on my feet, or if I stand or walk a bit more than around the house. Yet, now I notice if I sit here at my computer in my chair, I also begin to hurt and I have to get up and walk away... so it is almost damned if I do, and damned if I don't.... I shall update my post as things happen.... until then keep all of us in your thoughts and prayers.... Rhia

Sunday, June 8, 2014

A Dear Friend and Her Own Fight with Cancer at a very early age, now coming back with a vengenence



Denise, you are so welcome, and I so treasure our friendship. You always have a smile for me, no matter how badly you have to be feeling. I relate a "bit" to the chemotherapy, just due to the same types of medications they are using for the RA and Lupus. But, I know all of the side effects that go along with much larger doses of most of them, can make you feel so horribly tired, and really probably ready for the sofa than on your feet at WG... yet you always do just as the others have said, have a smile, a kind word, and for that you bless each soul that comes in and who has a chance to get to speak with you. Jim and I have just been so uplifted by your prayers, the card was just awesome for Jim, he talks about it all the time, and he got it from you just when he was having a down moment in the hospital. So, again you were "there" in words and spirit when he needed that so much. It is so very, very difficult to watch someone close to you have to go through so much "drama" to say the least in life. I still find myself "questioning" why? Why you? Why Jim? Why myself, and the many, many other people that are just kind, honest, and want to bring something "good" into the world have so much physical, mental, and/or emotional pain? I try so hard to not let that show, and I also try NOT to feel like my own health issues, and now with Jim's... that in public, I don't want to "burden" others with the sometimes gory, and sometimes almost down right unbelievable things that have happened to us, especially since about this past Christmas. I know some must think I am just nuts, and there is no way myself, Jim, friends like you... could have to succumb to so much, so quickly, and without a "break". My own health issues have just in themselves even brought my pain doctor to tears just last week, when I told him how much had happened since he filled my pain pump just over three months ago. Then when I tell him about Jim's plight in the midst of it, he was just stunned. He stood their shaking his head and saying he sometimes just can't believe people have to endure such hardship, whether in physical illnesses, emotional and family issues, and all of the mental anguish that some of us have to go through in life. I am sure him being a pain specialist and someone who served in the armed services as a physician, before his own practice he has
 seen and does see so many people suffer so much. And what truly makes that almost sad, is the very thing he wants to do in being a Pain Specialist, is HELP HIS PATIENTS... yet due to ALL of the rotten insurance companies, the government fingers all over Medicare, Medicaid, the Medicare Advantage Plans, such as mine, and those that come in desperately needing relief, yet they have no insurance, and just the cost of one medication could be more than anyone could afford in a month! He talks about it frequently, and he is very open about his feelings in how he cannot serve his patients as well as he wants, due to mainly the governments fingers in it all. Those doctors in a setting like him, with an office staff that is at least 7 or 8 people, all of the salaries and so forth, and I know by looking at what my Advantage plan "pays" him, honestly, he probably "loses" money on just me for one, when he fills my pump!!! I know for a fact he was when they were having to still do it over at the hospital in outpatient! They got "what little was paid" but most of that was MY OWN MONEY for my co-pay for outpatient! He was not getting a dime for months and months. Then after winding out of the bureacratic red tape of the government (that by the way MAKES HIM have special software in his office on his computers if he has Medicare patients that costs him something like 75,000.00 or more just at the beginning! So, finally after over a year of fighting over the "rules" of the games played, he can now refill my pump in the office. But. still he really only makes again about what comes out of "my pocket" which is the $40.00 co-pay. My insurance basically makes him "write off" the majority of the costs. Well, he nor any doctor can do a good job and try to "do no harm" as their oath says, when they either have to overload their practice with so many patients in order just to pay the bills, OR only take so many, cutting the rest of us out... for instance, and we are seeing it more and more with my Advantage Plan and now with the help for Jim... the doctors are turning away even Medicare patients! They simply are going broke... when a doctor like himself puts a pain pump in a patient like mine, his costs are high of course. But,, when he has to wait 2 YEARS, yes I said 2 YEARS & finally a "judge" tell Medicare to pay him for those patients, it is no wonder they are having to not take patients with these types of health coverage anymore. For that, it is almost blasphemy of our constitution, when we as a nation refuse to "HELP OUR OWN PEOPLE" stay well and out of pain!!! I witness this type of stuff daily due to the advocacy, volunteer, and ambassador I try to help out with as much as possible. I try my best to GIVE VOICE to ALL of US & I also mean people with "regular" health insurance also. I KNOW how much my own type of infusion medication for just ONE infusion costs, and what they expected ME to pay out of my own pocket! And I am supposed to have 2 infusions, 2 weeks apart, every 4 to 6 months! I am looking at over $1,500.00 for ONE!!!! So, I can imagine the financial burden you have to be enduring with your types of medications, doctors and the care you need!!!! I was relieved to see they are putting on another "event" for you! I just know those financial costs start soaring when you must have to have that type of care. It is as I said almost blasphemy to the American People! We can take millions of dollars over to other countries to help them, but we can't even FIRST take care of our own people!!! And I am certainly ALL FOR HELPING out other countries, I realize MANY of them are in much more burden, with basically no health care, and when we can any and all of the nations that can afford it should help out. BUT!!!! NOT BEFORE we GIVE OUR OWN RIGHT HERE what they need first! Take care of those that are right here, for instance our own food bank had a huge article in the local paper last night, pleading for money! They usually ask for donations of non perishables, good used clothing etc... but they came out and thanked all of us for the donations from the postal service we just did, BUT they are basically OUT OF MEAT! Things that are perishable, and they usually have enough finances to squeeze by for, now they are just about broke when it comes to providing our own in our community one of the basic things they need nutrition wise. It just made me so sad and mad that a community such as ours (and I know many families are strapped and cannot give, because they are the very ones that NEED the help) but we have enough corporate sponsorships, & those that can donate. Yet, as we all know just as I said about even some physicians, the entire nation, the entire world, is strapped for cash, as far as us "down" near what I am sad to say, but it is the truth "poverty level". Anyway, enough of my "rambling", except for the fact I am "able" at least for this moment "able to ramble" again. Honestly, I have felt my "voice" that allows me to write etc... had possibly left for good. But, one moment of being able to express my thoughts, even though they are rambling... is a good thing Rhia