Side effects??

Mary Jo · 03-25-2007, 07:33 PM

Hello everyone,

Just wondering if those of you who were on chemo and herceptin and are now finished have any long term side effects? I'm still battling with this left side ache/discomfort. My onc. thinks it's a bowel/intestine issue and isn't worried about it. I started with the "ache" in October of 05 while on chemo. I remember vividly mentioning it to my onc. at that time. I also remember that it started (I think so) after I got really constipated a few days out of a chemo/zofran treatment in Oct. of 05. That's when I remember my side hurting - near the rib area and down that side.

I did have a PET/CT scan the end of December 06 and nothing showed up their. I'd think that if it were cancer and causing discomfort we would have seen something there if it were cancer. I would think by this time a tumor would be large. But there was nothing.

I can't lie and say it isn't driving me nuts ONLY IN THAT I can't help but wonder why and then the cancer scares surface. I am avoiding seeing my regular doc because I'm hoping it will go away because I don't want to go in and DON'T WANT TO HAVE TESTS. I've had enough of those in the past year and half. And as we all know.....the reason I am afraid of more tests is I'm afraid of hearing the bad news. I never use to be fearful of that BUT once hearing it we all know it's possible and I don't want to hear any of that. So avoidance seems best. Maybe not smart BUT best.

I'm thinking that since this has been going on for well over a year (17 months) AND I've had a PET/CT scan and I'm not dead yet and have no terrible symptoms (other than the left side irritating me) and feel great that this must be a side effect I'm suffering from chemo damage to my intestines.

Have any of you had different "problems" to deal with since you've been out of chemo/herceptin for some time. I've been off of chemo for 16 months and herceptin a little over 5 months.

Thanks for your input.

Mary Jo

hutchibk · 03-25-2007, 09:10 PM

Hi Maryjo

I have noticed so many unexplainable 'tweaks and aches' since my journey started 3 years ago. I have had recurrence, but none of my pains have had anything to do with my micro-recurrences... I understand the feeling of always being afraid of pursuing or mentioning anything! I think we all know that fear. I do mention everything to my onc, and if it is anything out of the ordinary or a symptom he has a reason to worry about, we will talk about it further, but he generally reassures me that we are on top of everything as much as possible, and if there were anything, we would see it in tumor markers and the 3, 6 mo and yearly scans that we do. I have noticed that when I stay ultra hydrated, I feel a bit better and less achy.

I just remind myself that all of the aches and pains are just my 'new normal' these days.

MJo · 03-26-2007, 06:17 AM

Cognitive for me. Chemo ended in May and Herceptin in December. I can't focus on reading and writing the way I used to. This isn't great, because I do business writing for a living. I hope for the best. I read about flavanoids in cocoa increasing blood circulation to the brain, so I just spent $9 on a box of cocoa that claims not to be altered by processing. I sure hope Hershey's gets the message and brings out something cheaper.

03-26-2007, 07:51 AM

Hi--I only did two rounds of taxol and carboplatin, along with herceptin, which I'm still on (six months to go) and the impact on my ability to concentrate is very distressing. Words and ideas come slowly these days and I forget from one moment to the next what I was doing, saying, or thinking. I'm taking so many supplements now that adding, even chocolate, seems excessive. Let us know if the chocolate helps. I could use some encouragement and no doubt so can many others. Thanks.

suzan w · 03-26-2007, 08:49 AM

As you can see by my 'signature' I finished chemo in Oct. 05 and Herceptin in Oct. 06. I am still taking arimidex...my 5 years of that will be up in Oct. 2010...lingering stuff that I notice...I do have some cognitive issues that are gradually improving, mostly word recall-especially if I am agitated! And then when I can't recall the word, I get more agitated...I have alot of joint aches, mostly knees and thumbs now but they seem to move from joint to joint. Again, much less severe than when I first started. I still get nosebleeds( which started when I began Herceptin), went to my reg doctor last month after a particularly bad one because I was sure I had something dreadful, and she did a full battery of bloodwork and turned up nothing! I hate worrying about every little ache and pain and wish there were some magic scan that I could have once a month that would look at everything and reassure me!!!