Author Archives: Tim Hughes Living with CML

Today’s Thoughts 4/10/2018

10 Tuesday Apr 2018

Posted by in Cycling, Leukemia, Weight Loss

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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.

 

Today’s Thoughts 4/7/2018

07 Saturday Apr 2018

Posted by in Cancer, Leukemia

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I took my first dosage of Bosulif on Tuesday, April 3rd, and so far I’m not experiencing any fortuitous side effects that I’m aware of.  I have called my oncologist to let him know that I have started taking the drug but he has not told me when to come back in for any followup tests.  I would imagine that he would want to see me in two to three weeks, at least time to see if the drug is working.

For those that may be interested, I’m going to post the side effects of this med later on in this post but first I’m going to recommend someone else’s blog.  BeautyBeyondBones is the blog that you need to go take a look at. She is recovering from Anorexia.  Her blog is about her recovery and she has several books about cooking and she has published a book about her journey from Anorexia to Recovery.  You should go and check her out.

Side effects of the drug Bosulif.

Important Safety Information and Indication

Do not take BOSULIF® (bosutinib) if you are allergic to bosutinib or any of the ingredients in BOSULIF.

BOSULIF may cause serious side effects, including:

  • Stomach problems. BOSULIF may cause stomach (abdomen) pain, nausea, diarrhea, or vomiting. Tell your doctor about any stomach problems
  • Low blood cell counts. BOSULIF may cause low platelet counts (thrombocytopenia), low red blood cell counts (anemia) and low white blood cell counts (neutropenia). Your doctor should do blood tests to check your blood cell counts regularly during your treatment with BOSULIF. Call your doctor right away if you have unexpected bleeding or bruising, blood in your urine or stools, fever, or any signs of an infection
  • Liver problems. BOSULIF may cause liver problems. Your doctor should do blood tests to check your liver function regularly during your treatment with BOSULIF. Call your doctor right away if your skin or the white part of your eyes turns yellow (jaundice) or you have dark “tea color” urine
  • Your body may hold too much fluid (fluid retention). Fluid may build up in the lining of your lungs, the sac around your heart, or your stomach cavity. Call your doctor right away if you get any of the following symptoms during your treatment with BOSULIF:
    • – shortness of breath and cough
    • – chest pain
    • – swelling in your hands, ankles, or feet
    • – swelling all over your body
    • – weight gain
  • Kidney problems. BOSULIF may cause kidney problems. Your doctor should do tests to check your kidney function when you start treatment with BOSULIF and during your treatment. Call your doctor right away if you get any of the following symptoms during your treatment with BOSULIF:
    • – you urinate more or less often than normal
    • – you make a much larger or smaller amount of urine than normal
  • The most common side effects of BOSULIF include: diarrhea, nausea, low blood cell counts, rash, vomiting, stomach pain, respiratory tract infection, fever, abnormal liver function, tiredness or weakness, cough, and headache

Tell your doctor right away if you get respiratory tract infections, loss of appetite, headache, dizziness, back pain, joint pain, or itching while taking BOSULIF. These may be symptoms of a severe allergic reaction.

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of BOSULIF. For more information, ask your doctor or pharmacist.

Tell your doctor about the medicines you take, including prescription medicines, non-prescription medicines, vitamins, and herbal supplements. BOSULIF and certain other medicines can affect each other.

Before you take BOSULIF, tell your doctor if you:

  • have liver problems
  • have heart problems
  • have kidney problems
  • have any other medical conditions
  • are pregnant or plan to become pregnant. BOSULIF can harm your unborn baby. You should not become pregnant while taking BOSULIF. Tell your doctor right away if you become pregnant while taking BOSULIF
  • are a woman who may become pregnant. Use effective contraception (birth control) during and for at least 30 days after completing treatmentwith BOSULIF. Talk to your doctor about forms of birth control
  • are breastfeeding or plan to breastfeed. It is not known if BOSULIF passes into your breast milk or if it can harm your baby. You and your doctor should decide if you will take BOSULIF or breastfeed. You should not do both

Indication

BOSULIF is a prescription medicine used to treat adults who have a type of leukemia called Philadelphia chromosome–positive chronic myelogenous leukemia (Ph+ CML) who no longer benefit from or did not tolerate other treatment.

 

Please see Patient Information and full Prescribing Information.

Today’s Thoughts 4/1/2013

01 Sunday Apr 2018

Posted by in Photography

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Happy Easter!! or is it April Fools?  However, I hope everyone had a good Sunday. I know I did.  In fact, I had a pretty good weekend.  All my kids were home Friday night, my son left Saturday night but returned on Sunday afternoon. Didn’t seem like they were here long when they had to leave this afternoon to go back to their different homes.

I was able to go visit my parents home on Saturday and I took my drone with me.  I took two flights, one was successful and the other, well, the camera wasn’t pointed in the right direction during flight and all I got was the horizon.  I’ll redo that mission the next time I’m up there.  Here is the other flight I recorded.  It’s rather long but it shows the area that I grew up in.  It also shows the hay fields in which my brother and I hauled hay out once the hay got cut and bailed.

 

Today’s Thoughts 3/30/2018

30 Friday Mar 2018

Posted by in Cancer, Photography

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Only 138 days left until I retire.  Not that I’m counting or anything.

I took my drone flying today. There’s an old railroad car yard that’s been left to rust near my home.  I’d been meaning to fly out there for a while now.  Today was the day.  I was off today being that today was Good Friday.  The wind was a little high but I managed to get the flight off without much of a problem.  I’ve got another flight plan that takes the drone down a little closer, maybe I’ll get to do it tomorrow.

I finally heard from my pharmacy today and I should be able to get my new meds on Tuesday of next week.  I sure hope I do well with this med.  I talked to the pharmacist and they told me that there’s a lot of side effects. Some pretty bad.  I can deal with some of the effects as long as the medicine works.  We shall see.

Today’s Thoughts 3/25/2018

25 Sunday Mar 2018

Posted by in Family, Leukemia, Photography

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Hello everyone!!  I hope everyone had a great weekend and is looking forward to going back to work.  Me?  I had a great weekend but I am not looking forward to going back to work tomorrow.  I guess most of are not.

My wife is off all week next week for spring break.  I’d like to take off with her but I’m trying to save my time just in case I have to go back to the hospital.  If I have time I’ll take two weeks either in June or July to go on vacation with my family.  I could save my time and just get paid for it when I retire but my kids would be able to get out of school in August when I do retire.

This weekend was spent in my backyard doing some pruning.  I’ve let my backyard go for several years because simply I haven’t felt like doing any type of yard work.  So now I’m paying for it.  Shrubs have grown into trees so I’m back there with an electric chainsaw cutting everything down and dragging it to the street.  The chainsaw is only good for about two hours and as luck would have it, that’s about how long I can last without taking some sort of a break.  I got a lot done this weekend but I’ve still got a lot more to do.  Here’s an aerial view of my backyard.  Too bad I don’t have a before picture so you can see what I’ve done.

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There’s an area just to the right and behind the white truck that I’ve cleaned out and to the right and behind the large bush directly behind the deck. I’ve cut down the large bush after this picture was taken.  The brush people will not be happy with me when they come and pick up the pile.  It’s enormous.

I hope everyone has a great week ahead.  I’m only working four days.  I’m off Good Friday.  All my kids are coming home so I’m planning on doing something with them on Saturday.  Sunday we’re spending it with my wife’s parents.  Lovely. (Insert sarcasm here)

My meds never came this weekend.  I guess a call to my oncologist will be in order for tomorrow.

🙂

Today’s Thoughts 323/2018

23 Friday Mar 2018

Posted by in Cancer, Leukemia, Photography, Weight Loss

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Clyde waiting for me to come home.

 

Good news!!  I’m down three pounds this week.  I’m trying to keep my carb intake to about 35 but I’m not doing so well. Maybe I’ll do better next week.

My meds still have not arrived.  I guess I’ll call my oncologist on Monday if I don’t get it this weekend.

Tomorrow I plan on doing some cleaning up in my backyard.  After which I plan on flying my drone.  My son is coming home tomorrow sometime so I want to make sure I’m here when he get’s here.  Next weekend is Easter weekend and all my kids should be home.  I’m really looking forward to that.  I can’t believe they’ve grown up on me.  Two in college and one living on his own.  They sure do grow up fast.

Today’s Thoughts 3/22/2018

22 Thursday Mar 2018

Posted by in Cancer, Leukemia, Photography, Weight Loss

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My new CML meds have not arrived as promised.  They were supposed to have arrived on Tuesday but alas, not here yet.  My oncologist called this morning to see if I had started taken them yet.  He was not happy that they had not arrived.  He said that he was going to find out where my meds are at and let me know.

I’ve attempted to start dieting again.  It’s been a tough couple of days.  I’m doing the low carb diet.  I lost 60 lbs on it last time I was on it and I’ve still got that and many more to go.  I’m trying to limit my carbs to 35 a day.  Today and yesterday I have gone way over.  Today was better than yesterday and I’m hoping that tomorrow will be even better.  I want to get down to 255 by August 15th and I’m 276 now.  I don’t think I”ll have a problem reaching it if I can gain the willpower to stick with it.  In 2009, I weighed the most I’ve ever weighed. At 346, I came to the realization that I had to do something.  Especially since my doctor told me that I wouldn’t see my kids graduate college if I didn’t do something.

The other reason I’m on the low carb diet is that of my sugar.  My body can’t handle carbs.  I can drink a cup of milk and my sugar will jump from 159 to over 250.  I did well all day today until I got home.  I checked my sugar around 5:30pm and it was 185.  I had a cup of milk, exactly 1 cup, not a glass full, and when I checked it just now, 10:35pm, it was 325.  The last time I did the low carb diet I pretty much did away with carbs altogether.  I went from a 9.6 A1c to 6.7 A1c in six months.  Now that I’ve gotten off my diet, my sugar has gone out of control.

Tomorrow is another day!!

Oncologist Update; 3/21/2018

21 Wednesday Mar 2018

Posted by in Cancer, Leukemia

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My oncologist called this evening wanting to know if my new meds had come in.  They had not.  He told me that my BCR-Abl numbers had greatly improved which is very surprising being that I’ve been off my Sprycel for nearly two months.  Too bad my body can’t handle the medicine any longer.  Once my new meds get here, which should be within a few days, I’ll start taking it.  The side effects looks pretty bad, diarrhea, fluid retention in both the heart and lungs, low red blood counts, liver problems and multiple other issues.  Bosulif will be the third medication that I will be on.  There are only a couple more that is out there that is approved by the FDA.  I’m hoping this works with minimal side effects402d22500b1841198233ebb8058faf26-bosulif_200_312

All is Well at the Home Front; Well, Sort of

20 Tuesday Mar 2018

Posted by in Nature, Photography

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We had some pretty bad storms come through the northern part of our state yesterday afternoon and evening.  There was an EF3 tornado hit one of our colleges and destroyed a lot of student dorms and apartments.  Luckily, most of the students were away for spring break.  I’m not sure where the students will live once school resumes.  Thankfully there were no fatalities.  Although, we keep hearing of one fatality through social media but not through official sources.

I had a small altercation with another vehicle this afternoon as I’m trying to enter the interstate.  As you can see by the sign I was clearly in the right.  If I hadn’t slowed down we would have sideswiped each other.  I’m not sure who’s fault it would have been but at times I wished I had a machine gun attached to my bumper.

A Few Thoughts and Other Entanglements

18 Sunday Mar 2018

Posted by in Family, Photography

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As I sit here tonight, they are predicting severe weather for tomorrow evening.  The biggest threat is north Alabama but they include large hail, strong winds, and a few strong tornados.  I can handle the severe thunderstorms but tornados is another thing.  I’m still not over the tornado outbreak of 2011 that wiped out nearly half of our town and killed eleven people in our community.

What I’m also doing is putting together a few videos that I’ve created.  Most of which have been taken to try and boost the city’s morale. We have several city FaceBook pages and each one of them consist of negativity about our community.  We lost a lot of homes and families right after the tornado.  With these homes destroyed, many of which were never rebuilt and the families moved out.  With that said, we lost a lot of tax money.  Our city doesn’t have the money for a lot of the upkeep and people are complaining about the trash, businesses closing, and crime.  What I’m trying to do is post these videos on these pages showing what we have to be proud of; A nice athletic complex, a nice school, a storm shelter, etc.

During the tornado of 2011, we thought we had lost the brand new school.  Some kids and I were on a bus with the band heading to Orlando for a school trip when the tornado hit.  There were all sorts of rumors that told of the school burning, people lying on the ground dead and many other stories.  Most of which were true but the school did not catch on fire.

The tornado hit about a half a mile from the school and the athletic complex.  Like I said, a lot of rumors floated around and we were happy that we didn’t lose either of these landmarks.  My house was also spared thankfully.  The athletic complex is one of the jewels of our community.  Between the complex and our park (I don’t have a video of it as of yet), the kids of our community wouldn’t have a place to go and play.  My kids were fortunate to be able to spend a great deal of time at the park and they couldn’t wait to go and play in the creek.

I think we take for granted these places that our city has supplied for us. We always focus on the negativity instead of the positive.  I’m really hoping these storms that are predicted for tomorrow will pass us by. I’m really hoping!!  I’ll let you guys know how we faired tomorrow night.