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Grayfeathersblog

~ Diabetes, Cancer Fighter, Father of Twins, Kayak Fishing, Lover of Life

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Tag Archives: CML

365 Day Photo Challenge 220/365 “Oncologist Report”

06 Thursday Aug 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Cancer, CML, daughters, Good Report, Life Is Good, Oncologist, Twins

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

Today was my day.  It’s been so long since I’ve had a day when most things went without having a problem.  I even had a civil conversation with my boss this morning.  My day was pretty well planned out so I went straight to it.  I stayed pretty busy and the day went by pretty quick.  About 2 pm the receptionist from my oncologist called and said that the doctor wanted to speak to me.  My results weren’t due in until next week so I immediately went into panic mode.  The doctor came on line and told me that my levels were lower than they had been since my diagnoses.  That was exactly what I was needing to round out my day.

I had a meeting after work so I got in really late but both my daughters were still up and they both had a great first day back to school.  That made me happy too.  Maybe this will keep going at least one more day until the weekend.

“Life Goes On!”

365 Day Photo Challenge 217/365 “Oncologist Appointment Today”

03 Monday Aug 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Alabama, Bike Ride, Cancer, Chemotherapy, CML, Cycling, Eye appointment, Eye Surgery, Oncologist, Photography, Waterfall

https://tchphotography.smugmug.com/Botanical-Gardens/i-LpJ69bk/A

I spent the afternoon at my oncologist today.  I never really like going there because it breaks my heart seeing all those people sitting on those recliners getting their chemo treatments.  Not knowing their situation I always fear the worse for them.  My blood work for the most part turned out ok.  However, they won’t get the results from the main test for at least a week or more.  The toughest part is the waiting.

Going to the eye doctor tomorrow to get a new prescription for new glasses.  Since my eye surgery my eyesight has diminished quite a bit so I’m actually looking forward to being able to see again.

I was not able to ride tonight due to a scout meeting I had to attend.  With tomorrow’s eye appointment I’m not sure if I’ll be able to ride or not.  Wednesday looks good but Thursday is out because of another meeting after work.  The weekend looks good but there is a waterfall I want to find and photograph so getting a ride in on Saturday may not happen.  We shall see.

“Life Goes On!”

365 Day Photo Challenge 204/365 “Stay Off the Internet!!”

22 Wednesday Jul 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, AML, Bone Marrow Biopsy, Bone Marrow Transplant, Cancer, CML, Leukemia, Photography

https://tchphotography.smugmug.com/Botanical-Gardens/i-M8vWhDb/A

When I was diagnosed with CML, my doctor told me to stay off the internet.  What he meant was don’t do any research on my own because if I did I might get upset at what I found.  He was right.  I did my research and I did find some information that made me concerned.  That’s all in the past now.  My doctor and I are on the same page and we’ve discussed everything there is to know about CML including what could happen if I skipped or stopped taking my meds,  if the drug I’m on decides to quit working or if the cancer decides to take a different route.  I have complete faith in my doctor and I trust him implicitly.

I have the Chronic form of this type of Leukemia.  There are other, more advance forms that are more difficult to control.  Acute Myeloid Leukemia is of course the most difficult form to get under control and often times means a bone marrow transplant, chemotherapy and sometimes even death.  In fact, there is a survival rate of 65% of all AML patients.  Which is not bad considering that just about 15 years ago the survival rate on only about 2%.

Age has a lot to do with being able to survive the processes of reaching remission.  Having to go through a bone marrow transplant plus going through chemo is something that takes a lot out of the body.  The information that I read today stated that people older than 60 years of age the chances of them reaching complete remission (CR) are not very good.  For people who are diagnosed after the age 60 usually are given three to five years even if they decide to go through the bone marrow transplant and the chemo.  Not very promising.

I brought this up because yesterday while on my way home from work I got a phone call from a friend of mine.  Her ex husband’s mother who is 86 years of age was diagnosed yesterday with AML. They have done a bone marrow biopsy and the diagnosis is confirmed.  Her MIL has decided not to receive any form of treatments.  The doctors have given her two to three months to live.

When I was first diagnosed with CML I was told by many of my nurse friends that if someone had a choice as to which form of Leukemia to get, you would want the Chronic form.  After hearing the news of my friends MIL diagnosis I feel blessed to have the Chronic form.  I would rather not have cancer at all but I do and I have to deal with it the best way I know how.

“Life Goes On!”

365 Day Photo Challenge 203/365 “Health Insurance; Love it/Hate it”

21 Tuesday Jul 2015

Posted by Tim Hughes Living with CML in Photography

≈ 1 Comment

Tags

365 Day Photo Challenge, Cancer, CML, Copay, CPAP, Deductible, Drugs, Gleevec, health, Insurance, Medications, Photography

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Health Insurance can be a love/hate relationship.  I am fortunate to work for an insurance company and I get my insurance at a discounted rate but it’s still very expensive. I still have copays and I still have deductibles that I have to meet before the insurance will pick up.  I fill sorry for those that have to fork out thousands of dollars each year for insurance.

Today I had to go pick up my new CPAP machine.  When the lady called me to tell me that I now qualified for a new machine I asked her how much I owed.  She checked her computer and said that my deductible had not been met and that my payment would be around $500.00.  I don’t have $500.00 to spend right now and told her that.

I have CML, a rare form of Leukemia.  My medication is very expensive.  It averages out to be around $600.00/pill.  I take one pill a day and my prescription is for a thirty day supply.  My insurance out-of-pocket yearly deductible is $2500.00 and my prescription costs $18,000.00 a month.  That means that I would have to pay $2500.00 for the first month and the insurance company would pay the remainder.  But first, and the most important thing is that I would have to come up with $2500.00 before I could get my first prescription.  Pocket change, right?  Not for me.  Who has $2500 just laying around?  Again, not me.

A little known fact is that some drug companies want you to take their drug.  So much so that they are willing to pay you to take it.  I am very fortunate to be on such a drug.  Gleevec is the manufacture of the drug that I’m on and they offer a financial assistance program to those that can’t afford the ridiculous prices of the medications. I first read about this on their website once I found out that I would be taking the drug.  At first I thought that it was only for those that didn’t have insurance but thankfully I was wrong.  I called them up and they paid all but $100.00 of the $2500.00 of my out-of-pocket deductible.  Wonderful news!!  I pay the pharmacy $100.00 at the beginning of the year and Gleevec pays the rest and I don’t pay a dime the rest of the year for this drug. That’s not the only good news that came out of this.  Remember the CPAP?  It seems that my CPAP was covered under the same plan.  Being that my deductible was indeed met I walked out with a new CPAP and a new mask for $00.00.

“Life Goes On!”

365 Day Photo Challenge 168/365 “New Beginnings”

16 Tuesday Jun 2015

Posted by Tim Hughes Living with CML in Photography

≈ 2 Comments

Tags

365 Day Photo Challenge, Alabama, Cancer, CML, Leukemia, Life, Photography

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It’s amazing how one minute life is as usual and then the next life turns upside down and you don’t know which way to turn.  Life should be as a highway with road signs that tells you that there is a turn up ahead or the speed limit changes that way there would be at least a warning that your life is about to be turned upside down.

I’m not one to give advice on such matters because each scenario would be different for each person and each person would handle the situation in different ways.  To have a new beginning would be hard to do no matter what you’re going through.

“Life Goes On!”

365 Day Photo Challenge 137/365 “Please Help Find a Cure for Kids’ Cancer”

19 Tuesday May 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Alabama, Cancer, Challenges, CML, Cycling, Fundraising, Great Cycle Challenge, June, Photography

https://greatcyclechallenge.com/Riders/TimHughesOLYMPUS DIGITAL CAMERA

I’ve signed up to ride in the 2015 Great Cycle Challenge this June. My goals are to ride 500 miles in the month of June to help raise money to fight Kids Cancer. I also have a goal to raise $1000.00 between now and the end of June. Both goals will be a challenge but I honestly think that they are achievable. If you would like to donate please follow the link.

I am fortunate to have kids who were born healthy and cancer free. I can’t imagine what a parent goes through hearing the words that their son or daughter has cancer. Great advances have been made in the medical field to help those with cancer, I know, I’m one of those patients. However, there are some types of cancer that they are still still learning about. I’m hoping and praying that with these funds a cure will be found.

365 Day Photo Challenge 116/365 “Test Results”

28 Tuesday Apr 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Alabama, Bluegrass, Cancer, CML, Dixie Stampede, Guitar, Oncologist, Pigeon Forge, RBC-Abl, Tennessee, Test Results, Travel

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I finally heard back from my oncologist yesterday.  It was such an emotional day yesterday that I forgot to post something about it.  It took them three weeks for them to get around to find the time to read to me my results.  Anyway, I know their busy and no news is good news, right?  Two months ago my RBC-abl test was .135 which is not bad but remember we’re looking for zero.  Yesterday I found out that that the new number is .08 which is better but again, not zero.  The oncologist did say that it was not uncommon for it to take eighteen months for it to get to zero.  It’s been 14 months as of the 14th of this month.

The above picture is of some pre-show entertainment for the Dixie Stampede, a diner show in Pigeon Forge Tennessee.  If you’re ever there it’s a must see.

“Life Goes On!”

365 Day Photo Challenge 49/365 “Running Out of Time”

18 Wednesday Feb 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Alabama, Cancer, CML, Dana Micael, Leukemia, Sick

http://tchphotography.smugmug.com/Photo-Shoots/Dana-Micael/i-wWCw9tQ/A

I’ve been sick since Sunday and so far I’ve missed two days of work.  I’ll be taking off again tomorrow to go back to the doctor to see if I can get another shot to hopefully finally get rid of this mess.  I’ve been sick more since I’ve been diagnosed with CML than in the past several years combined.  The doctor did say that my immune system will be low but I wasn’t really prepared for all the time off that I’ve had to take so far.

“Life Goes On”

365 Day Photo Challenge 44/365 “Night Out on the Town”

14 Saturday Feb 2015

Posted by Tim Hughes Living with CML in Photography

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365 Day Photo Challenge, Alabama, Aniversery, Cancer, CML, Gymnastic, Leukemia, Pep Band, Photo, Photography

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Went to Tuscaloosa tonight to the Gymnastics meet and also spent a few minutes with my son who played in the pep band.  Please forgive the picture as I was way up in the stands with my 70-300mm zoom lense.  Our team one which is always a good thing.

Today marks the one year anniversary since my diagnosis of CML.  I’ve got an appointment to see my oncologist in just a little over a month.  I’m still waiting on the test results that state there are no traces of the cancer in my blood.  That day will come soon enough I hope.

365 Day Photo Challenge 34/365 “Good News”

03 Tuesday Feb 2015

Posted by Tim Hughes Living with CML in Photography

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365 Photo Challenge, Alabama, Birmingham, Cancer, Chronic Myeloid Leukemia, CML, Oncologist, Photo, Photography, Railroad Park

http://tchphotography.smugmug.com/Birmingham/i-JfvvrW4/A

Good news to share tonight. I heard from my oncologist today. He said that things looked better this time around.
There are three tests that he performs. All three tests started off extremely high. Two of those test for the past few months have come back with no trace which is what we’re looking for but one of these test is being somewhat stubborn. Six weeks ago the results were .22 which had went up from .134. The last test showed .0015 which is excellent compared to 138 nearly a year ago (normal is between 5 and 10). We’re still looking for zero. I go back in 2 months for another round of tests. Thanks for all your prayers and support.

The above picture is from Railroad Park in downtown Birmingham, Alabama.

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