My leukemia's back.

[Cynthia12]

That was fast! Got a phone call. So now I will just get a phone call back from the neuro which is just a couple of cities over instead of way up north. That works! Plus he's already got the order in at a place in the same town for my CPAP. I think I have one of the best docs around.

 

[Cynthia12]

You all may have seen this before, but...butt...

 

[MrsMistyReal]

I called the doctor's office yesterday, and spoke with her nurse. She ended up putting the doctor on the phone. I asked about going off the Ibrance. My research confirmed a couple things.

1. For quite awhile now, I've realized that Israel, and the UK tend to PUBLISH a lot more of their research findings than we do here in the US. I'm not saying big pharma doesn't do the research here. I'm saying they pick, and choose the information they want released.

2. I've also noticed that there are medications, procedures, devices, and other medical advances that tend to get shelved longer, or modified here, not to ensure their safety, but totally based on the impact they make on income for big pharma, and the medical community.

That being said, I had mentioned my blood work was coming back indicating a serious problem. The blood work was indicating either the cancer, or the chemo had modified my DNA, so I had a form of leukemia. Metastatic breast cancer isn't enough to deal with, right? At first, I was devastated. The more research I did, the worse it got, and I had to do my research in small doses.

I came across a study that was recently published in the UK, and more recently in the New England Journal of Medicine. During the trials involving 168 people, right from the start, 3 people began showing similar blood test results to mine. By the 5th. cycle of Ibrance, their blood work was identical to my last results. I was on my 5th. cycle of Ibrance, when the doctor hit me with the bad news. Everything indicated a genetic mutation, which is medical speak for a form of leukemia. When bone marrow biopsies were taken, the results showed no actual change in leukocytes, or anything genetic. The change was caused by the Ibrance. When taken off the Ibrance, by the 5th cycle, their blood work came back normal. During the course of the 5 year trial, several others began showing the same type results in their blood tests, so they too were taken off the Ibrance, and soon their blood work came back normal. They also noticed that in the instances where this occurred, the Ibrance was ineffective as a treatment. They suggested using one of the factors of the blood test as a biomarker, to discontinue treatment with Ibrance. I've known this for at least a week now.

Yesterday, they called to schedule my CT scans, and MRI. Later, the Ibrance people called to schedule delivery of my Ibrance. I let it go to voicemail. That's when I called my oncologist's nurse, to tell her about the study, and ask about discontinuing the Ibrance. She put the doctor on, and we discussed it.

First off, she was shocked I had even heard of the European Hematology Assn., or knew what it was, and told me so. Her first comment was, but that happened to so few people. My response was, so what? Just because it happened to so few people, does not mean it's not happening to me. True. Next, I mentioned that the entire study was done on "so few" people, since there were only 168 in the trials. 3 out of 168, isn't "so few" people. Next, it happened later on to more people. Remember, you have to deduct the original 3 from the 168, since they discontinued taking the medication. We're down to 165 people. Over the next 5 years, there were at least 5 others that did this too. 8 out of 168 people is not exactly "so few". Nonetheless, in all instances, it showed the Ibrance would not work for me. Could I stop taking the Ibrance? Then she remembered who she was talking to. I mentioned Verzenio as a possible option.

First off, she wants me to continue on the Ibrance until the next office visit. We have a baseline she's following on my scans. The blood work shows changes, but the scans may not bear that out, in which case she is inclined to agree that it's probably the Ibrance causing the problem.

Next we discussed the possibility of Verzenio. Normally, just before a new cancer treatment is released, their pharmaceutical reps are all over it, providing the oncologists, and various cancer doctors with all the information, so they're armed, and ready when it hits the market. She saw the commercial for it on tv the other night, and had never heard of it. She asked some of the other oncologists at the cancer center there, she asked at the University, she asked at Lee Moffit, and none of the oncologists have gotten any advanced info on it. She's already called the rep., and expects be highly informed by my next visit.

excellent information thank you

 

[MrsMistyReal]

Something else, I did not even mention to her, but will take the paperwork in on my next visit.... I have copies of ALL my blood work. On the left column it show what was tested. On the same line, in the middle column it shows my number. On the same line in the right column, it shows the normal range. For a couple of my tests, the normal range has changed. I have it in black, and white.

2/07/2018 MCH 34.7pg normal range 26.6 - 33.0pg
3/09/2018 MCH 35.0pg normal range 26.6 - 33.0pg
4/14/2018 MCH 35.8pg normal range 27.0 - 31.2pg

The normal range has been lowered. It's this way on a couple other tests too. They've suddenly changed the normal range.

Wow going to go over hubby's blood work & see any changes,thank you once again

 

[N F C]

@getaclue your plan sounds mutually beneficial to both you and your DD. You're doing the kind of thinking ahead that we all should give some thought to. No one knows how much time they have. When my sister suddenly passed from a blood clot at age 46 it would have been easier for all involved if a plan had been in place for her children (especially her oldest who is handicapped). Keeping you and your family in my prayers and thoughts.

@Cynthia12 what are the differences between panic attacks and anxiety attacks (if you don't mind my asking)? I'm glad you like your doctor, that sure makes things easier.

 

[Blooie]

I was wondering that too, Debby.

and prayers for Cap, Cynthia, GAC and Misty......and of course for all of you who who might be in need of one or the other, or both!

 

[Cynthia12]

Think of being overly anxious. Then think of what you've either experienced or heard of what an actual panic attack is. Big difference. There are different types of anxiety. There is only one kind of .. panic attack!

 

[bruceha2000]

Om, Om, Om.

At least you know you aren't going to drop dead next week, that should reduce the anxiety a wee bit. Knowledge is power, you can deal with it now.

 

[getaclue]

As a very young child, I absorbed information like a sponge. I learned that some information is useful now. Some information is useful later, and should be filed away in the mind. Some information is worthless, discard it. Sounds simple right? It's not. As you absorb more, and more information, it becomes very hard to remember it all. UNTIL, I discovered cubby holes. Remember in kindergarten when each child had a cubby hole, and each child stored things in them. There was even an extra cubby or two for other uses. In my mind, I built a huge wall of cubby holes. My favorite color is purple, so important information that I didn't need right now, but that was important, or that I needed to remember more often, went into my purple cubby hole. I've continued with this system for years, adding pictures, or name tags to the cubbys. The first time I ever heard of anyone doing anything similar was on a tv show called The Mentalist. He used a mansion with many rooms, and filed his information in rooms.

At a young age, I learned my mind was not always my best friend. It would tell me I had studied enough, and needed to do something fun. It would tell me what was fun, and what was not fun. My brain would direct me to quickly lash out in anger when my brother did something mean to me, or pulled a prank on me. My brain would direct me to complain when I didn't get my way, or I had to be patient.

I began fighting back. No, I have not studied enough, I want to learn this. If I learn this, I will be free to play all day tomorrow. There were times my brain flat out wouldn't cooperate. I was reading the words on the page, or mathematical formulas but not learning them. I didn't let my brain get away with it. I continued reading whether it seemed like I was learning, or not. Sometimes, I forced myself to play games, or watch tv shows I didn't find particularly entertaining. My brain would scream, if I have to watch one more minute of this show I'll explode, or I hate this game so why am I playing it? Stop playing this game, or I'll explode. I knew my brain was not going to explode. At times, I would fight my brain about lashing out in anger at my brother. When my mom would take me to the doctor's office, I began forcing myself to sit still, and be patient. I didn't know the words "instant gratification", but I knew my brain wanted that, and that was not always the best long term option.

I was about 8, when our home got broken into, and robbed. My "sanctuary" had been violated. I was no longer completely safe there. I became afraid of the dark, afraid someone was waiting to break in, etc. One night I got tired of it, and wrestled with my brain. I reminded myself that I was not at home when the robbery occurred, and I was safe. I had been safe for 8 years. I would be safe for at least another 8 years before someone tried to rob us again. When my brain would start the, "but what if" I would cut it short with "but what if we never get robbed again?". "But what if the robber gets caught robbing someone else, and is sitting in jail?" "Even if someone breaks in, will me staying awake worrying about it, prevent it? No it won't. Can I stay awake at night for the rest of my life worrying about whether someone might break in?" "No, I can't." I fought thoughts, with reasoning thoughts. Most of the bad thoughts were pure fiction, imagined by my brain. That night, I went to sleep, and have never been afraid of the dark. From that, I learned to control the "what if" response when bad things happened, or I got bad news.

By the way, because of these things, I was at at a 6th. grade math, and reading level in 1st. grade. Back then, they did free hearing tests at school. I was tone deaf. Being tone deaf, apparently could cause anxiety, so I was hauled off to be evaluated by a psychiatrist. It was decided the tone deafness was not causing me any undue anxiety, but I was to sit in the front row at school. You know that noise chalk makes, or fingernails screeching across a chalkboard, and everyone cringes? I couldn't hear it. I decided that being tone deaf was not really a bad thing.

If you've never watched the tv show called Brain Games, you should watch a couple episodes on youtube. Yes, people's brains are not always their best friend. The way the brain accomplishes what it's designed to do, is not always in a person's best interest, or even true.

Cynthia, what I'm getting at, by design, I was predisposed to being a "nervous child". I should be eaten up with anxiety, and panic attacks by now. I was not a nervous child, and I'm not plagued with anxiety now. May I suggest a couple things that may help? When you first wake up, tell your brain I will meet today's challenges the best I can, and it will be sufficient. When your brain asks how you're going to accomplish this, it doesn't matter. Keep reminding yourself, I will meet today's challenges the best I can, and it will be sufficient. Schedule 30 minutes of worry time. I know it sounds crazy, but it's not. Do not schedule worry time right before any meals, or before bedtime. You can schedule worry time after any meal, or at any time during the day. Schedule it for the same time each day. Set an alarm, and only allow yourself to worry for 30 minutes. Let your mind go where it pleases for 30 minutes. Let it go to those deep, dark, scary places of fear, and worry. When the alarm rings, remind yourself all those things are just in your head, and worry time is over. Then go back to your mantra, I will meet today's challenges the best I can, and it will be sufficient. Anytime your mind wants to do the "what if" in the negative, any negative thoughts that come to mind, remind yourself it has to wait until tomorrow's worry time. It takes time, practice, and being stubborn. Will this stop all your anxiety? No, but in time it will reduce a lot of it, and give you more control over it.

 

[Cynthia12]

Wow, thank you for sharing GAC. I'm thinking I will try thinking things over during the day. I have a real bad tendency to lay down at night and remember.. rethink.. things that have happened during the day. It's more often than not about DH. This is my first time experiencing anxiety, like this. Been anxious, yes. The normal kind. I'm doing better already. Haven't started the meds. I've started a really bad head cold. Shucks. These usually turn into that non stop hard cough. Hoping this will be one of the quick colds. Then, if I'm still having a hard time, I will try the med. Thinking I will be ok. Now that I know what's going on. With me, I just want to know, then I handle accordingly. I'm not worried about what the, yet again new Neuro. will have to say. I have after all, been been living with the thought that I do have MS, the slow kind. Lucky me, serious! DH, my biggest worry for now. Going to find the best time of day to spend time thinking about things, and reading up on the illness. Stop using bedtime for it, sleep instead.