Saying no to chemo - thoughts?
Hi all, I've been following the posts here and finally got up the nerve to post. I was diagnosed with leukemia (CLL) in 2007 and haven't had any treatments. I'm at the point now where my RBC is horrible - I've had one blood transfusion and several iron transfusions. Another bone marrow biopsy last week and I have to have labs taken every week now. Oh, and a PT Scan this Saturday.
Unfortunately, I have so many other problems that I don't think I would survive chemo anyway. Sjogren's Syndrome (the worst!!), Barrett's Esophagus (waiting for the results of an endoscopy), acoustic neuroma - so I'm deaf in left ear (no big at this point), had emergency brain surgery in 2012 to remove a mengioma that got out of control. It was successfully removed however there are some "atypical cells" left. The doctors couldn't agree. One wanted me to have radiation on them every day for 6 weeks, the other said to get an MRI every 6 months which is what I'm doing. My recent one last month showed all ok now, except slight dementia starting (my husband would attest to this). 
Mild COPD, some sort of bowel problems as yet not diagnosed, severe bladder prolapse - I won't get into the gory details on the last two.
Well, there is even more but I'm sure I've bored everyone enough. My veins are thrashed so during my BMB the doctor said they would put a port in when I started chemo. There were other people in the room so I didn't feel comfortable talking to the her then. I have a follow up appointment in about a week and I've decided to tell her no thanks to chemo. I can barely walk out to the mailbox, my fatigue is so bad.
I haven't dwelled on this at all; I knew the day would come so I've made my decision. Any thoughts/support would be helpful. Best to all of you, Jennifer aka Mimi
= new reply since forum marked as read
I don't really know what advice to give, but it sounds like you have been through a lot over the last seven years. I had to look up some of the conditions that you have since I wasn't familiar with them, but now that I researched them it seems like chemotherapy would be especially difficult for you.
You obviously have known that you've been in a near terminal state throughout this time so I hope that you were able to make the best occur throughout those years. From my personal POV, I'd rather focus on enjoying whatever time that remains and building memories with those around me than go through the pain of chemotherapy. While I only know you online, it appears that you have made a difference in the lives of others and will be missed.
although it sounds as if you have already made one.
Some types of chemo have to be done through a port, but that should not be reason against chemo as it can be a life saver.
No matter what the decision, I wish you well.
(just enmeshed in my own problems)
As for a port, I have one (actually it's my second, we removed the first after we thought I was "cured" . It beats the hell out of getting regular IV's. If you have any expectation of need of continued intravenous medication, a port makes all the difference.
As far as, should you do chemo? That's up to you. Personally I'm doing chemo, but I've had some drugs that were so debilitating that I ultimately dropped them - extending the quantity of life does nothing for me if the quality sucks. I accept a reduced quality of life as a result of the illness, but if I can't actually function, then what's the point?
If you've decided not to, I support it. If you're unsure, I'd say try it, and if life improves, great. It's not a yes-or-no deal - you get to test drive for as long as you like. And if you stop liking the ride, it's your option to stop.
I may do that myself; if this next series of stuff is really negative, I may stop and let the clock run out, no longer feeling invincible but at least free of hospitals and debilitating treatments. On the other hand, if I tolerate it, I'll keep going. I'm under no illusions that I'll be here 15 years from now, but I've already passed my expiration date, so who knows?
Best with whatever you decide. Make the decision that gives you the most happiness.
