Author Archives: Tim Hughes Living with CML

I’ve been bitten by the riding bug!

24 Tuesday Apr 2018

Posted by in Cycling, Weight Loss

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This past weekend gave me the opportunity to get my bike out and ride.  It was only 10k but at least I got out there.  I had planned on riding more when I got home but my better half had other plans.

While riding Saturday, I noticed some things that needed attention on the bike so I took it to my local bike shop to have it serviced. It’s been since 2015 since I’ve done anything to it being that I haven’t ridden it much since I got sick.  I took it to them yesterday and picked it up today.  I couldn’t have done it any faster but I definitely could’ve done it cheaper.

I’ve already told my better half not to plan on anything for me to do tomorrow evening because I’ve got plans. Plans which includes riding as far as I can and as long as I can.

Stepping Out on Faith

22 Sunday Apr 2018

Posted by in Cancer, Cycling, Leukemia, Weight Loss

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I just signed up for the 29-mile Crimson Tide Ride in Tuscaloosa on July 28th.  I’ve ridden this ride several times but when this medication started messing with my lungs, I was no longer able to do so.  Right now, I feel like I can do it again.  It’s true that my longest ride so far this year has only been a little over eight miles, with the time left before the ride, I’m confident that I’ll be able to do the ride.  That is if my new meds don’t interfere.  If I continue to improve, I should be able to do the 36 mile next year.  I understand it has several more hills to overcome.

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Yesterday, our company participated in the Birmingham Corporate Challenge.  There were several events ranging from tug of war, corn hole, homerun derby, dodgeball, cycling and several other events. I participated in the 10k bike stroll.  It was a very simple route.  It was a three-mile loop that you had to do twice in which about a mile of it was a long hill.  This hill nearly whooped my butt the second time around.  Having forgotten my water bottle didn’t help matters any.  The event actually started with events on Thursday and ended about 6pm on Saturday.  Our company came in second overall last year.  It was sponsored by Chik fila and they gave out free chicken sandwiches.  I can’t wait to see where our company ended up in the standings this year.

Today’s Thoughts 4/19/2018

19 Thursday Apr 2018

Posted by in Cancer, Cycling, Leukemia, Weight Loss

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Got home late yesterday due to having to work later than normal.  I had my day all planned out before I got to work which included getting off early and trying to extend my mileage from 10 to at least 20 or more miles.  Didn’t happen.  I got to work and found out that I was going to have work the desk dispatching calls all day.  Which also meant I IMG_20180418_174749wasn’t going to be able to get any cycling in.  Not a total loss though.  I did stop at the track and got my 10,000 steps in for the day.

As much as I like getting out on my bike and ride, it’s important to me to get out and do something to enjoy the outdoors, even if it’s just walking on the walking track. Most of last year I just didn’t feel like getting out and doing anything.  Once I made it home from work, I didn’t have the energy to do anything but to shower and relax in front of the television.  I gained weight, my A1c went up and basically felt like crap. Now that I have my health back, for the time being, I’m taking advantage of it and getting out and doing something.  In the short time that I’ve been feeling better, I’ve been able to get out and ride, three times so far, I’ve gone to the track a few times and my A1c has come down a few points.  When I feel better I’m able to take better care of myself.

Stay Healthy!!

Hazards of Cycling (Part Two)

17 Tuesday Apr 2018

Posted by in Cycling, Weight Loss

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As much as I love cycling and the benefits that it has, you’ve got to consider some of the hazards that come with it.  Living in the suburbs, I have a limitless place to ride. But to get to it I have to travel on some busy roads.  While most vehicles obey the three-foot law, others do not.  And another thing, some do not take into consideration that while passing me they don’t think about the oncoming traffic.  I’ve seen several near misses.  One of these days I’ll get to witness a wreck.

Another hazard is dogs.  The one in this video is always there.  I’ve squirted water, yelled, kicked and nothing has stopped this dog from chasing me.  While this dog hasn’t tried to bite me others have.  The ankle biters are the worse. At least with the big dogs, they tend to stay on one side of you and bark.  The ankle biters are all over the road.  You never know where they’re going next. One of my wrecks was from dodging one of these ankle biters.

I’ve often thought about using mace to squirt on the dogs but after thinking about it I’ve decided that given the wind I don’t want this stuff coming back in my face. That would be bad. So, for now, I’ll stick with wasting my water by squirting the dogs.

In closing, let me say this.  The benefits of cycling will outway the bad.  Just keep a mindful eye on your surroundings if riding in the city.

Be careful out there

Cycling Can be Hazerdous to Your Health

15 Sunday Apr 2018

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When I first started cycling, I was using a bicycle that I had purchased from a fellow co-worker some twenty plus years ago.  That meant the bike I was riding a bike that was close to thirty years old.  I used that bike for nearly a year before purchasing my new Cannondale.  The old bike, a Trek, had what I call suicide shifters.  The shifters were on the down tube and you had to take one hand off the handlebar to shift gears.  Most of the time I had no issue with doing so but sometimes, with the bike being so old and poorly maintained, the shifters didn’t work well and I would lose concentration and off the bike I would go.  Luckily, the whole time I rode this bike I never had any broken bones, just minor road rash.

 

 

 

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My 35 yr old Trek after a minor incident.  I still have this bike.

 

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My new 2013 Cannondale

 

 

 

 

Saturday Blues

14 Saturday Apr 2018

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I’ve spent a lot of time today on my computer, mainly deleting old files and moving some files around. Just trying to get more organized.  While doing so I found some GoPro videos of some bike rides that I’ve been on.  I decided I’d share one with you.  This video is of the Old Howard Bike Ride.  This ride is located in Perry County, Alabama.  The event benefits Sowing Seeds of Hope.  Here’s the link to the event

https://www.samford.edu/events/old-howard-100

The video is less than 2 minutes of the first twelve minutes of the ride.  It is a century ride but I only rode 30 of those miles.  As you can see, it starts off pretty flat but it gets pretty steep toward the end.

If you’re ever in the area around the mid part of April and if you’re a cyclist, I would highly recommend this ride. It goes through three counties of the historic Black Belt.  In fact, one of the rest stops is at a historic Victorian home. Again, it’s a charity ride and it goes to a good cause.

 

Today’s Thoughts 4/14/2018

14 Saturday Apr 2018

Posted by in Cancer, Leukemia

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Good afternoon everyone.

As I write this, we are experiencing a severe thunderstorm. This system has caused several tornado’s in the state of Mississippi but has weakened during its path over to our neck of the woods, in which I’m very thankful for. Looks like it may be a wet Saturday for us.

My cat, Clyde, hates thunderstorms and is sitting next to me on the floor looking for protection.  He’s not a lap cat and hates to be picked up and will not sit with you or me or anyone else as far as that goes.  But during storms, he seeks my protection and my protection only.  He just heard a loud clap of thunder and off he goes behind my bed.  He will not return until all is quiet again.  Funny,  cowardly cat.

Not much reaction to my video that I posted the other day.  I guess that might my last one. I don’t know, I may try one more to see how it goes.  I’ll give it some time though.

After I made the video, I went back to youtube and watched some video’s from the Leukemia Society.  They had posted several videos of patients with CML as they described their weeks up to being diagnosed.  They included bruising,  Feeling tired all the time, headaches and wanting to sleep all the time.  I never experienced any of that.  On one video, the guy was saying that when he was diagnosed back in 2014, his white blood count was over 260.  Mine was caught before it got that high.  At the time of diagnoses, mine had gotten as high as 138.  Maybe that’s the reason I didn’t experience any of the side effects; my numbers just wasn’t as high as his.  I also read that one lady, who also was diagnosed in 2014, got her numbers down and was taken off all of her meds.  She still get’s tested every six months but she no longer takes meds for her CML.  That’s encouraging.

I hope everyone has a chance to get out and enjoys the weekend.

Tim

 

 

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.