Tag Archives: Bone Marrow Transplant

Living With CML To Be Or Not To Be

03 Thursday Oct 2019

Posted by in Cancer, Disability, Family, Leukemia, Photography

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As a child I used to love to ride roller-coasters.  I would ride for hours just to ride different coasters.  As I got older I out grew my fascination with coasters because my stomach couldn’t handle going upside down and being bounced around as much.  I guess riding a coaster is the best way to describe living with CML. It is for me at least.

The last few months have been just that, a roller coaster.  Since I was diagnosed in February of 2014, I’ve been on three different medications.  I had to change  because either the medicine quit working or it caused fluid around my heart and lungs.  In January of 2016 I had both type A and type B flu as well as pneumonia along with fluid around both of my lungs.  I was admitted into the hospital where they did all sorts of tests.  They eventually removed just over two liters of fluid around my right lung.  There was at least that much or more in my left lung but they would not remove it due to risk of infection.  It was during this time they took me off the medicine that they thought was creating the fluid.

In March of 2016 I was placed on a different drug and up until August of this year, I haven’t had any side effects of the drug.  But, unfortunately due to becoming severely anemic, and after having several tests done, they found that I had a bleeding ulcer.  Oh, but it gets worse.  The medicine for the ulcer reduces the effectiveness of the CML drug.  We were told that it didn’t but it did.  During the first several months after taking the ulcer meds, my CML numbers started increasing.  After several months of this my oncologist decided that he had done all he could for me and that he was referring me to a bone marrow transplant team.  These were to be the darkest days of my life.

About the same time I was diagnosed, another young lady in my community was diagnosed with CML. She didn’t like the side effects the drug was causing so she stopped taking the drug.  Her CML escalated and she had to have a bone marrow transplant.  I followed her on Facebook through her whole ordeal.  She was in the hospital for six long weeks having this procedure. I remembered her ordeal when I was told that I would be having the same thing.

The doctor that I was sent to was not on the transplant team.  The hospital he is associated with is one of the best cancer research centers in the US but the doctor had a lot of growing up to do.  He was fresh out of college. In fact, I have a son that is not much older that he is.  My other oncologist has over thirty years of experience but like I said, this doctor is fresh out of college and from another country to boot.  Nothing wrong with that though.  What this doctor had in knowledge, he lacked in experience.  I saw this doctor about 4 times and it was enough to know that there wasn’t going to be a 5th.  He did have a couple of suggestions that I did get out of our visits.  He stated that I was not a good candidate for a bone marrow transplant and that I was probably taking way too much medicine.  He also mentioned that I was supposed to be taking my cancer meds with food, which at that time I wasn’t.

So, as of today, I’m back with my previous oncologist, my numbers are back where they need to be and most everything is where it needs to be.  I am working on getting disability. I have a hearing in January.  I’ve had to get a handicap place-card because of gout in my right foot.

So, as you see, my life has been somewhat of a roller coaster. It’s been up, then down then on the up side again.  I’ve been reading books and trying to listen to some easy jazz music just to help me relax a bit.

Sorry for the long post.

 

 

 

Life is an Adventure Part 2

19 Friday Jul 2019

Posted by in Cancer, Leukemia, Photography

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Today was my appointment with my new oncologist.  The doctor looked like he was fresh out of med school.  He looked like he was about my son’s age, about 26 or so.  He is from Saudi Arabia or somewhere close by with a heavy accent. I had no trouble understanding him so he must have learned English at a young age.

He arrived to my appointment about an hour and a half late.  I was not impressed by this.  However, he did have a good excuse.  He said that his excuse was in two parts.  One, he had to do rounds for his partner who was on vacation this week and he had to receive a teleconference with a group in Korea that involved a case study he was involved with.

I went in this appointment thinking I was to have a bone marrow transplant aka stem cell replacement. So I was a bit surprised when he said that I would stay in my current med for a while.  He also stated that because of my current health condition, with my diabetes and cardiac issues,  I was not a good candidate for stem cell replacement. The option would still be there but not right now.  We will continue to “work” with the current meds and see if we can get them to work again.

The numbers, although higher than normal. were not really that high, according to my new oncologist.  He has seen higher and with that said, has gotten the numbers back down to a manageable rate with little to no problem.

I have little choice but to trust him.  We will see what he has to say and we’ll do what he asks. I go back in one month for more lab work and for another visit.

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

22 Wednesday Jul 2015

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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!”