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Tag Archives: Side Effects

The 80/20 Decision

19 Wednesday Aug 2026

Posted by Tim Hughes Living with CML in Cancer, Leukemia, Life, Uncategorized

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Asleep, Benadryl, Cancer, Cliff Notes, Doctor, Drug, health, infusion, Iron, Kendle, Leukemia, Life, Medication, mental-health, Oncologist, Reading, Side Effects, writing

I had an iron infusion today. Before I went to the treatment room, I was unexpectedly led to an exam room, where I waited for several minutes.

I was beginning to get a little concerned because I had another doctor’s appointment later in the afternoon, and I really didn’t want to be late. My normal infusions take approximately two hours, so I had a right to be concerned.

Eventually, my doctor stuck his head in the door and told me he needed to see me, but it would have to wait until after my infusion. He assured me that the information he had for me wasn’t bad.

Of course, there’s nothing quite like a doctor telling you, “It’s not bad,” and then walking away.

That statement may be reassuring to him, but my brain immediately responded with, “Well, if it’s not bad, why can’t you tell me now?”

My infusion itself went according to plan. They gave me Benadryl as a precautionary measure, and within a few minutes, I was sound asleep.

I always bring my Kindle with me so I can read while I’m getting my infusion.

I don’t know why.

I think I have brought that Kindle to every infusion I’ve had, and I’m pretty sure the most I’ve ever accomplished was getting past the title page.

At this point, the Kindle is basically just an expensive security blanket.

I should probably start bringing a pillow instead.

Once the infusion was finished, I finally got to meet with my oncologist.

Thankfully, the meeting wasn’t nearly as bad as I had imagined.

It was about that one marker that just can’t seem to behave itself. Apparently, there is a new drug available, and my doctor would like me to consider trying it. He gave me some literature to take home and asked me to let him know by next week whether I want to give it a try.

The biggest reason he wants me to consider it is the success rate. According to what he told me, about 80 percent of the people who take this drug can be free of the cancer within five years.

Eighty percent.

That’s pretty encouraging.

Then there’s the other 20 percent.

Those are the people who will have to remain on some type of medication for the rest of their lives.

And, knowing my luck, I’ll probably be sitting in the 20 percent section.

I can see it now.

“Congratulations! You have been selected for the premium medication package. Unfortunately, there is no prize.”

Of course, I’m joking…mostly.

There are also some potential side effects that I need to consider. Upon first inspection, there are concerns about pancreatitis, heart problems, and kidney problems.

Unfortunately, those aren’t exactly unfamiliar words to me. Most of these are things that I’m already dealing with or being constantly monitored for.

Apparently, my body likes to keep my doctors employed.

That’s probably one of the reasons I’m hesitant to make a quick decision.

My doctor gave me some literature to take home and read so I can make an informed decision.

I’ll probably need the “Cliff Notes” version to fully understand what I’m reading.

Medical literature has a way of taking something that could probably be explained in three sentences and turning it into twelve pages of words that require a medical degree, a dictionary, and possibly a translator.

I’m sure somewhere in those pages it will say something like, “This medication may cause some serious side effects.”

Then I’ll spend the next three hours wondering if a headache means I’m dying.

On the other hand, the possibility of eventually being free of the cancer is hard to ignore.

I’ve been dealing with this for years, so the thought of taking a different medication with the possibility of reaching that point is certainly appealing.

Now I have a week to read through the information, think about it, and probably drive myself crazy trying to decide what I should do.

I suppose that’s the downside of being given choices.

Sometimes it’s easier when someone else just tells you what to do.

For now, I’m going to read the literature, talk to my doctor if I have questions, and try not to let my imagination get the best of me.

After all, I’ve already spent two hours today worrying about news that turned out not to be bad.

I might as well give my brain a little time off before it starts worrying about the next thing.

And if anyone needs me, I’ll be over here reading my “Cliff Notes”…

assuming I can figure out what the Cliff Notes are saying.

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.

 

Today’s Thoughts 4/7/2018

07 Saturday Apr 2018

Posted by Tim Hughes Living with CML in Cancer, Leukemia

≈ 1 Comment

Tags

Bosulif, Medical, Medicine, Observations, Oncologist, Side Effects, Test

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.

Oncologist Update; 3/21/2018

21 Wednesday Mar 2018

Posted by Tim Hughes Living with CML in Cancer, Leukemia

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Tags

BCR ABL, Bosulif, Cancer, Fluid Retintion, Liver Problems, Medicine, Oncologist, Side Effects, Sprycel

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

365 Day Photo Challenge 363/365 “Feeling Miserable”

28 Monday Dec 2015

Posted by Tim Hughes Living with CML in Photography

≈ 1 Comment

Tags

365 Day Photo Challenge, CML, Oncologist, Side Effects

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This is going to be short and sweet.  I’ve got a headache that I’ve had for several days and today my chest started hurting when I breath. These are all  listed side effects of the new meds.  I called my oncologist today and he has taken me off the meds for a week.  I’m hoping that I’m coming down with a cold or something and it’s not my new meds.  If it’s not one thing it’s another.

365 Day Photo Challenge 362/365 “Feeling Side Effects”

27 Sunday Dec 2015

Posted by Tim Hughes Living with CML in Photography

≈ 2 Comments

Tags

365 Day Photo Challenge, Head Ache, Pain, Side Effects

https://tchphotography.smugmug.com/Botanical-Gardens/i-VHCv9xc/A

I’m going to make an early night.  For the fourth day in a row I’ve been dealing with a headache that I can’t get rid of.  It’s not a migraine but a dull pain across my shoulders and around the back of the head.   Although it is one of the side effects of the new meds I’m not going to condemn the meds just yet.  It could be a sinus headache but I seriously doubt it.

“Life Goes On!”

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