Best Of
Re: Starting Chemo May and June 2024 Support Thread
Hi! I'm actually not sure how to respond to people on this thread? I also had the same symptoms as you. Fatigue hit on Saturday and then faded out day by day and now I am feeling pretty normal. I also had a ton of GI issues. I followed the BRAT diet and drank a ton of water but nothing helped. My MD finally gave me a prescription for Lomotil since the Immodium wasn't working. One dose and I'm sooo much better. The only other things that I have experienced are loss of taste and red spots on my face…. My tumor was quite large and it is ALREADY like 1/2 the size it was. It is unbelievable! Funny we are on the same schedule! Hope you are doing well?
Re: Unfortunately it appears I am back.
Update, though not a happy one…..
Was prescribed Faslodex and Kisqali on Tuesday, though I’ve been unable as of yet to get VA pharmacy to fill the Kisqali. It’s “going through the process.” Had more MRI yesterday, and the result on my portal says there’s hazy irregular lesions involving the spinal cord at C7, possible leptomeningeal carcinoma vs artifact. I suspect it’s not artifact as I’ve been saying for two weeks that I feel physically like I’m dying, and quick. I hope to God I’m wrong because I don’t have my daughter set up yet to be as ok as she’s going to be able to be. Can’t get in to MDA…..even the latest mri and the prognosis without treatment which indicates I might not make it until my july appointment isn’t enough to get an earlier appointment.
The thing is this……none of this needed to happen. None of it. I’m putting this out there not to complain and “poor me” or for sympathy. I’m putting it out there so that if anybody in the future is reading it, and is in the position to make a difference in treatment, particularly of women, they will know the reality and the consequences of dismissing people as “just anxious.”
Not only was my diagnosis missed in 2017, I started many months before my Oct 2019 diagnosis saying something is wrong. I specifically said something is wrong on my left side (my cancer was ultimately discovered in my left breast). A male doctor (not VA) told me as I was trying to describe all my odd symptoms, “I have other people to see, I need to examine you and move on.” He wrote it off as anxiety. The VA sent me to mental health and assumed it was anxiety related to my 9/11 PTSD diagnosis. I kept trying to tell them I wasn’t making it up. They diagnosed me with a “somatic” disorder, basically hypochondria. They even convinced me it was just my anxiety. Only it wasn’t, it was cancer. I didn’t know what it was but I knew my body and I knew something was wrong.
In about Feb of 2019, a female doctor (not VA) told me “are you anxious? Yes but I think it’s because you know something is wrong and nobody is listening.” She, unfortunately, very suddenly parted ways with the clinic before we tracked down what was wrong.
In Oct 2019, I found a lump. Myself. On the left side just as I’d been saying. I did all the treatments. Surgeries. Took my letrozole every day without ever missing a dose. After the initial treatment, I was treated/followed at a local clinic and an NCIC cancer hospital. The local clinic as it turns out was head and shoulders above the big hospital, and would have caught this had I stayed with them. The big hospital does NO routine labs for follow up, even though I was Stage 3 at diagnosis with 8/11 lymph nodes. Not even a CBC or Chem 20, much less tumor markers. They do not image either unless you come to them with symptoms. They check your scar line and your lymph nodes, basic physical and that’s it. I did tell them every visit starting a couple years ago that there were two spots on my back that felt bruised when I would lean back in a chair. They would bang on my back and ask does that hurt, then send me on my way. I know now that those spots are where T6 and T11 would be, which is where I now have the most cancer and a fracture in T6.
I moved my treatment to another NCIC center with a doctor i trusted. In July of last year I went to him about rising tumor markers (done at my local clinic) and was told don’t worry about it. He did CT for restaging, declared it clear, his nurse and I cried with relief. He showed me the actual CT images and I asked about the things that had lit up on my CT on my back and asked how do you know that isn’t cancer. He says because it’s on the edges not in the middle. Said it was arthritis. Said we’d rescan in six months but not because of anything on that CT. There was nothing of concern.
Six months later, another CT. This one showed a fracture in T6 and a shadow that might be cancer or might not. I asked how concerned are you. He said “in a less anxious patient, I’d wait and rescan in six months, but I’ll do an mri if you want.” I said I want an mri. THAT showed widespread osseous disease over my whole spine. A bone scan then showed it everywhere, skull, vert, iliac, sacrum. Now potentially leptomeningeal carcinoma. Which if true, as I understand it, means I’m likely not even going to have time to get my daughter a car she will need, to buy her the gifts I wanted to put away for future Christmases, to make the videos I wanted to leave with her, the cards, the letters. I’m likely not going to put up a tree with her this Christmas. Can’t get through the junk in storage to keep her from having to do it. Won’t see her dance again. She’s 16. Alone in the world other than me. And I could have been here longer with her and for her if somebody would have just listened. But I was “anxious.” Overreactive. Not mentally ok. Yes, I was all those things. Because I knew my body. And nobody would believe me.
Re: The Next Person Game
(my mom’s dog crossed the Rainbow Bridge today)
False
The next person had breakfast for dinner
Re: Cats, cats, cats
Rocky is beautiful.
It did work out for adopting Rickey-Bob. I think Midnight Louie is happy. I have not been feeling well and he ha been very attentive. He loves his momma, all to himself. LOL
Re: Cats, cats, cats
My cats are suddenly boring. Except Rocky he wants to run away. Actually I have been fighting the same battle with my knee as with cancer. Started having lots of pain in the backnof my knee. Finally figured out that something smwas right with the calf muscle in my surgical leg. Went back to PT with a different therapy group. My first therapist gave me 11 exercises and when I was done discharged me. Apparently I was not ready. My left leg is about 25% weaker then my right leg and it is struggling to keep up. Hence the pain. Now I am struggling to keep up with PT but it is helping.
Re: Cats, cats, cats
Where have all the cat people gone? I am adopting another kitty. Hope it works out