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Tag Archives: Medication

Everyday is a Blessed Day!

11 Friday Jan 2019

Posted by Tim Hughes Living with CML in Cancer, Leukemia, Photography

≈ 2 Comments

Tags

Cancer, Drugs, Leukemia, Medication, Medicine

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It’s been nearly five years since my diagnoses of CML, a form of Leukemia.  If I had received the diagnosis back in the 1990’s I would have been told to go home and make my funeral arrangements.  With today’s modern medical advancements, which I’m highly thankful for, those of us with this diagnosis are able to live a somewhat normal life for many years.

There is a “go-to drug” called Glevic that is prescribed to most all new patients.  This drug worked for me for a while but stopped and I had to find something else.  The next drug caused more problems than the actual cancer did.  This new drug I’m on is working for now but is causing fluid around my heart and lungs but not as bad as the previous drug.

Is my life back to normal, no.  There have been many changes that had to be made to make my life a little better.  Because of the fluid around my heart and lungs, I’m no longer able to do a lot of the things I used to do.  Basically, I had to stop anything that would cause me to get out of breath with exertion.  That doesn’t mean I’ve given up.  I still try to walk and stay active. Every morning that I wake up I feel blessed to still be here. I’ve got a lot to live for and I hope I’m here for a while to come.

Today’s Thoughts 4/10/2018

10 Tuesday Apr 2018

Posted by Tim Hughes Living with CML in Cycling, Leukemia, Weight Loss

≈ 3 Comments

Tags

Cancer, carbs, Compitition, Cycling, diet, Life, Medication, Side Effects

It’s been seven days since I started my new medication.  At this time there hasn’t been any noticeable side effects.  I’ve had the pharmacist from the drug company call me twice to check on me.  Like I said in my last post, this is a fairly new drug so they’re just concerned about me I guess.

On April 21st, there is a city-wide competition with some of the business in town called The Birmingham Challenge.  I have signed up with my employer to ride in a 10k bike stroll.  The bike stroll is not a competition within itself but we get points as to how many cyclists we get to ride in the event.  It’s the same way with the walking event.  We do, however, have other events that are competitions, such as the tug a war, dodgeball, corn-hole, golf, home-run hitting, and a couple more events.  Last year our company came in 2nd overall.  I’ve signed up for the cycling event.  I haven’t been on my bike for nearly a year, until this evening. I know it’s not much but I rode a whole 2.4 miles.  I could’ve ridden further but both my headlight and taillight were not charged and I didn’t want to ride without them.  I really surprised myself.  I actually dreaded getting back on my bike and tackling the hill in front of my house.  I got a little winded but I made it with no problems.

I’m back on my low carb diet.  I blew it this weekend.  Those Little Debbie cakes ought to be illegal.  I’ve finally got my wife on board with me with her cooking and she’s not giving me bread or potatoes so the failure this weekend is all on me.  I just “grazed” all weekend.  I had lost seven but on Monday, I gained five.  I hate losing the same weight that I had already lost before.  Today I did great though.  We’ll see when I check the scales in the morning.

I check in again in a couple of days.  In the meantime, enjoy your week.18157141_10154580034993946_3844449760811629204_n

From last years event.

 

3/16/2018 Oncologist Update

18 Sunday Mar 2018

Posted by Tim Hughes Living with CML in Cancer, Family, Leukemia, Photography

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Bosulif, Cancer, CML, Doctor, Drug Card, Drugs, Family, Insurance, Medication, Prayers, Test

Oncologist Update: Because of some miscommunications with the insurance company, go figure, I have not been approved to be on my new medicine yet. I may end up walking the paperwork to the department myself if they keep losing it. Anyway, it’s been six weeks or more since I’ve had any CML meds and we, more so me than the doctor it seems, are starting to get a little concerned that my numbers might get a little high. If the insurance company approves the meds, it could take up to three weeks before my meds arrive. Nothing to do but wait. But, as luck would have it, the representative for the new drug was there in his office. He gave my doctor a card for a free 30 day supply which should arrive by Tuesday of next week. This should give my insurance company time to process my approval for this drug.

Bloodwork. It’s been six weeks since my last lab. My last one wasn’t good at all. Every one of my numbers was either very high or very low. Yesterday’s numbers were normal for the most part. This was in large part the effect of the drug I was on. The side effects just made my daily life impossible to deal with.

New Drug: Bosulif is the name of the new drug. Right now I’ve been on two of the most common and there are only a few left that is approved by the FDA. Thanks to Karen Davis-Hudson she eased my mind about some of the side effects that were mentioned in the insert. However, Karen, I think you mentioned that 1/10 developed fluid retention, my doctor said 4/10. Not that much of a difference. The other side effects I think I can handle.

The Good News: The doctor and I both agree that the fluid in my lungs is gone and we’re going to have a positive attitude that it will not return and that this medicine will be the last one I have to be on because this one will work. I can breathe, my color is back and most importantly, I feel good. So much so, that if the weather holds, I’m going to try to get my bicycle out one day this weekend.

This is all due to all the prayers that have been lifted up for me and my family. Thank you so much.

Have I Told You Lately How Much I Hate Hospitals??

15 Tuesday Nov 2016

Posted by Tim Hughes Living with CML in Cancer, Photography

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Tags

Breathing, Cancer, Diastolic Heart Failure, Fluid Retintion, Hosptials, Lungs, Medication

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To get it out of the way and I know everyone is tired of seeing pictures of the “Super Moon”,  here is the one that I spent over an hour trying to get the exposure correct.  Not exactly happy with it because it’s still a little out of focus.

A lot has happened since my last post and I’ll try to make it short as to not bore anyone.  But a brief recap is in order.  Back in August I had major breathing issues and I checked myself into the hospital thinking it was my heart.  They did a stress test, an echo-cardiogram and a heart heart cath. and found that I had 70% blockage in one of my arteries where they placed two stents.  My breathing had not improved any.

They then decided to do some breathing tests and ordered a CT scan.  They found fluid in my lungs.  They drew out 2 liters of fluid from my right lung.  I felt great afterwards.  They think that it’s my CML meds causing the fluid retention.

Two months later, in October, my breathing started getting bad again. My pulmonary doctor ordered another CT scan and found more fluid in my lungs.  He pulled just over a liter of fluid off my right lung.  Keep in mind that they haven’t touched my left lung.

Since all the fluid has started building up in my lungs, all three of my doctors (cardiologist, pulmonary and oncologist) agreed that a reduction of dosage in my CML meds.  It was reduced from 100 mg to 80 mg.  But my problem returned even quicker after my last fluid withdrawal.

Last Monday, November 7th, I couldn’t take it any longer.  I had to get some relief.  I couldn’t do anything without stopping and catching my breath.  Tuesday, after I voted, I went to the emergency room. I told them what I wanted them to do and they proceeded to do x rays. X rays showed nothing so they proceed to do another stress test and echo cardiogram.  But not after I sat in the emergency room all day on Tuesday.  I was finally admitted late Tuesday evening and they started doing the tests on Wednesday. Wasted a full day on Tuesday.

I was released on Friday evening but not after having another liter and a half removed from my lungs and another diagnosis of diastolic heart failure.  So, I’m on nitroglycerin patches to help me breathe and a whole lot of other meds as well.

 

365 Day Photo Challenge 352/365 “New Medication”

17 Thursday Dec 2015

Posted by Tim Hughes Living with CML in Cancer, Leukemia, Photography

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365 Day Photo Challenge, Cancer, CML, Medication, Sprycel

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I heard from my oncologist today and I’ve got a new drug to take for my CML.  The survival rate is no more than the previous drug but as long as it keeps me alive I’m good. It also has about the same side effects as the other so unless there’s something I don’t know about I guess I’ll be ok with it as well.

I stayed home again today with this kidney stone that has yet to pass.  I had to get up early this morning to take a pain pill but so far today I’m moderately pain free.  I’ll be going into work tomorrow regardless if I’m pain free or not.  I’m low on time so I have to go in.

365 Day Photo Challenge Day Twenty “The Straight and Narrow”

20 Tuesday Jan 2015

Posted by Tim Hughes Living with CML in Uncategorized

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365 Photo Challenge, anxiety, Depression, HDR, Medication, Photography

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Some may disagree with me but I think we have all chosen the path we travel.  At some point in out lives we made a decision that eventually made us into what we are today.  I made several “wrong turns” in my life that I now regret now that I have had a chance to look back.  Some of which I knew once I made the decision I would live to regret it and it would have dire consequences.

It’s how we handle these “wrong turns” in out lives that really matter.  Although I have not been diagnosed but I know I have bouts with depression and severe anxiety attacks.  I guess I should talk to my doctor about it but I really don’t need any more meds.  I try talking to my wife about some of the issues I’m having but she doesn’t understand.  She says she does but there’s really no way she could.

I know ignoring the problems isn’t healthy and I don’t really ignore them.  When ever things get tough at work I try to face the problems head on and deal with them but my question is, am I really handling the problem in the right way? Is there a different way I should be dealing with the problem.

Sorry for the rambling but it’s something that I had to get off my chest.

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