25 replies to this topic

[AliceJane]

I came back, to say;

Yes, I know I get to be a babbling dummy. Because of circumstances I have been in perfect storm of attack on me physcally, mentally and emotionally for last few years. To have to deal with CML and know you are weakest you have ever been in every way is scary.

I have to deal with the next thing next.  Me not using right words and not remembering test names is not a choice I made. My brain is not working right. I can not remember peoples names. If I want to watch a show and I check and see that it will be on in 1hr 28 min. I have to set timer, and then go through to see what the program was that I wanted to watch. These are small things but it applies to big things as well.. I am trying to climb out of whatever this is. I don't mean to be this emotional or air headed. I just am and I am all I have got. I actually used to have very high IQ. This is hummilating for me.

But thank goodness every time I have come  here I have had my questions answered and you have helped me.

Transplant was not solution, it is back up plan.  I was so desperate I grabbed at straw and misunderstood.

I am convinced of that.

alice

[tranier]

Hi!  My son BJ is on Day +11 for transplant for Blast Crisis CML...We did a lot of research and got 3 specialty transplant hospital opinions...What happened to BJ hasn't been seen in over ten years b/c of Gleevec...While I advocate having donor match if Insurance pays for all CML'rs In no way would I agree to transplant with how well you are doing...but what

frightens me the most is that any specialist would consider using your own cells for CML-I would surely get lots of backup opinions...the very Nature of CML makes that concept very risky...Transplant is a last resort for CML - 2 years experience

since dx and as a teacher and part-time professor I've done a lot of research and made many calls to specialists!  Thankfully and prayerfully BJ is doing well so far, but we would not be here, believe me, if there were any other options!

[matt92711]

"I learned to take it with Sprite, that helps me burp and doesn't hurt so much"

I love that phrasing and think I will make it my motto for life!

You sound like you had a really tough time with the CML but glad to hear that you are making progress. I can't imagine a transplant unless all other options are exhausted. It can't hurt to be aware of the options, but I suspect a transplant is not better than putting up with the side effects/complications of the TKI's. The amazing thing about TKI's is that they are coming out with new versions and until you have gone through them all there is always the possibility that the next one will be the right fit for you.

Glad to hear that you are happy most of the time and I think I can relate to the odd sounding part of it (granted you sound like you have gone through much more than me or most of us here). Friends often wonder how I can sound so happy when talking about CML and I try to explain that while it is something I have it does not have me. I like to tell people that I can now cross off my list of 50 things to do before I die, "get a rare disease."

[AliceJane]

There is a very good reason that I am happy most of the time.  I can take anything, I know that now.

those 2 yrs before I found out I had CML, and Dr kept telling me I was greiving to death, she wasn't only one, both my kids had cut off almost all contact with me They were so upset, thought I was willing myself to die. I rarely got to see my grandkids. Friends one by one gave up. The few who stayed, My cousin and closet friend had strokes and her son moved her 600 miles away, my other friend and cousin, was found dead next morning after an out patient treatment. and my Aunt who had been more a mother to me than my own ever was died of brain cancer 3 months after I was diagnosed. Then 2 months later closet thing I ever had to brother, my late sisters widower hung himself.

I was totally alone, through sickness or death I lost everyone who had stood by me. And I felt so betrayed by the rest.

BUT, this is what I learned, I was okay with me, I could cope, I did not lose it, It seemed like every blow just made me stronger. One day I was sitting on back porch and I KNEW, it did not matter what I had lost,or if I would get any of it back, I was okay!  I loved the rain and thunder, I loved the summer and fresh tomatoes, I could not wait to find the next good murder mystery, and dang how long did I have to wait til the next Twilight movie.  Some of the most awful things that could happen to a person, almost everything you ever saw in any tearjerker movie, had happened to me sometime in my life, AND now I had cancer and I was mostly alone. AND I wanted to live, I wanted to live cause I loved life, I wanted to hang around and see how so much turns out. I was happy to be alive, and holy moly, I realized I woke up everyday, excited to be alive. I cried sometimes, but I always felt better after. I got mad but I got over it. I got sad for days sometimes, but it always lifted, cause I just got sick of it. I could throw one heck of a pity party some lasted for days but that was a relief and I came back stronger every time.

That is why I am happy, nothing gets me down for long. I am like a timex, I take a licking and keep on ticking, everytime.  Who knew?,

I did not work for it. I did not earn it.  It was just part of me.

Thank you God, I was born this way, What a gift you gave me.

alice

[CallMeLucky]

Wow, I can't tell you how much I envy your spirit

[Fas]

AliceJane,

Let me tell you what I feel reading you story - I think your strength and spirit is remarkable.  I am absolutely in awe of you - you re a force of nature.   We all have moments of being at a breaking point and you have endured much more than most.   I understand the frustration and so do others on this site.  I know it is hard - try to be a bit gentle with yourself right now, you deserve it.  

No one wants to go to transplant, but it is still a needed option for some.  I've learned that treatment decisions are based all on timing.  Days after they confirmed my diagnosis, I had a meeting with the transplant team who reviewed my options for transplant.  As an only child, they would have to find the best match they could sourced from the volunteer base.  They did the blood work and the information was saved for future use, if needed.  From the beginning of treatment transplant was viewed as the last resort, backup plan, especially as I had no siblings.  I think knowing all available options and being accessed for them is proper medical treatment.  Sounds like your doctor may just be acting on the most current information available and providing you with another alternative, albeit one that most would not want to take.   

In my opinion, treatment options should be lead by the desire of the patient.   Being a well informed advocate for your own interest is vital to achieving our best possible wellness.   Every doctor I work with is in partnership.  I think I have an obsessive need to be heard and my experience respected and I accept no less.  I have learned a lot participating on this board the last few weeks, especially about the newer drugs and being better informed is helping in my communications with my doctor.  He was really impressed with some of the questions I asked him at my follow-up last week.   

Thank you all for your kindness and generosity in sharing your stories, knowledge and genuine feelings.  I am most appreciative of the support I have received.

Blessings,

Fran