6 replies to this topic

[August1]

Hi everyone,

I am on 100 mg Sprycel and my last PCR was 0.5% IS after about 15 months of treatment. My last FISH was 0% so I've achieved CCyR but, overall, I have had a slow response. Recently we had some heavy snow in our area which unfortunately delayed delivery of my meds. So I've been off of drugs for four days now. I feel fine but yesterday when my son was holding my hand I noticed it felt sore which was strange for me. I don't remember hitting it or anything although I did have to do a good amount of shoveling recently. Now this morning I've got a pretty noticeable bruise between my thumb and forefinger. Never had a bruise there before in my life so I'm not sure what to think. Would you consider a four-day drug break enough time to result in changes in blood counts or give CML an advantage? Last time I stopped treatment, to go from Gleevac to Sprycel, my PCR shot up pretty quickly but later dropped back down. I'm right at the 18-month timeframe so concerned that this is pretty bad timing for something like this to happen.  My Sprycel should arrive today so I'll get back on it right away but thinking my next PCR in a couple of weeks will not be great. Considering reaching out to my Onc before then. Appreciate your feedback.

Thanks,

Bill

[hannibellemo]

Bill,

It's the shoveling! I wouldn't worry about 4 days, Sprycel makes our platelets less effective and even if you haven't ever had a bruise there before I can see how it would happen shoveling snow.

I do try to arrange delivery of my drugs so they arrive 7-10 days before I need them. I've also managed to build up a three months supply by taking advantage of ordering out of sync for vacations, and we've switched insurance carriers so I got one order late in December and one early in January a couple of years ago. It gives me a buffer. I'm thinking it might help with the "donut hole" of medicare some day! 

Try not to worry - it really doesn't do any good anyway!

Pat

[August1]

Thanks, Pat,

I'm sure you're right. I know I worry too much. The meds arrived last night so I'm back on the program and hoping for good results on the next PCR. Wishing you the same.

Take care,

Bill

[Marnie]

Bill. . .I second what Pat said.  I order my meds as early as I can and have built up a cushion.  It is a comfort.

Also, to help set your mind at ease.  I had to take a 9-day and 15-day drug break due to pleural effusion.  I was pretty uptight about my PCR heading upward, but it did not, to the surprise of my onc and myself.  I don't think a few days of missed dosage will matter.

Marnie

[CallMeLucky]

I appreciate the anxiety, but understand that cml is chronic slow form of cancer.  You have a cytogenetic remission and you would likely be fine for quite a bit without treatment.  Four days is not going to harm you.  Think of all the people who need to take breaks for various reasons.

You will be ok.

[tazdad08]

Hi Bill,

You should be receiving a package in the mail in a few days!! I tried to send you a private message, but it said that your inbox is full

Jimmy

[August1]

Thanks Jimmy!

Didn't realize the Inbox only allows 5 messages to be stored.

Bill