still feel lousey

[bev]

I finished up my PCI on march 14,I am still having some side effects. I was doing pretty good,just getting some fatigue, and brain fog. But this week it really hit me hard. I started to feel extremely fatigued,nauseas the thought of food is sickening.I was also feeling very woozy. I saw my oncologist yesterday, checked my blood. Said I was only 1 point down on my red cell count from the last time I was checked. They gave me a shot of aranesp. Thought that might help, and I have to say that I think that it has, I am not as fatigued as yesterday, but still not able to go to work. And the nausea is still there and cannot eat. Has anyone else had these symptoms so long after treatment? I thought that each day you would get better, not have any backslides. I am having my 3 month ct scan next week then my pet scan. If there is anything going on it will show up. But for now not sure how to handle this setback for me. I feel I must shake this I have to get back to work. Any suggestions? Thanks Bev

[Patkid]

Bev,

Our cancer experience is just beginning............so no good input for you except that we care and we are praying for some relief and good scans for you.

Love

Pat and Brian

[Nancy B]

Hi Bev,

I finished 20 PCI treatments about the middle of November. I got through surgery, 4 chemo cycles and the PCI without losing a pound (didn't gain, just didn't lose). Right after Christmas I started feeling very nauseous, the thought of food made me sick. I finally thought maybe there was a carbon monoxide leak in our house (older house). I read up on the symptoms on the internet and I had them all except for the ringing in the ears. I called the gas company on a Sunday morning and they told me to get out of the house and they would be here shortly. Mollie (my dog) and I sat in the car for 2 hours waiting. Well, there was no cm, so finally my gp gave me some suppositories to stop the nausea. I guess this lasted about a month. They suggested Ensure or Boost.

Gosh, this is getting long....but, I have lost 30 lbs - needed to, but I still don't have my appetite back. I eat healthy and just til I'm full (doesn't take much. They don't want me to lose anymore weight. But no more nausea!

I really thought I had like a 2-week stomach flu - no one ever told me there would be side effects that long after treatment. I am not sure if it has to do with the radiation, but food just doesn't taste that good anymore, which is not an all bad thing.

I would be interested to hear from others that have experienced this. Bev, you are the first one I have heard from but sounds like exactly the same thing I had happen. Just be careful to not get dehydrated and see if you can get some anti-nausea drugs from you doc to get you through this. Best of luck to you. PM me if you want to talk.

Prayers and hugs,

Nancy B

[DebsSky]

Hi Bev:

Sorry to hear of your troubles. My Mom has the exact same thing going on and she finished PCI mid-February. She has her next check June 7, so hoping all is good.

My thoughts and prayers are with you and take good care of yourself,

Deborah

[daggiesmom]

Hi, sorry you're having such a hard time for such a long way out. This stuff they give us is toxic, remember, and I think the effects can be lingering. Just in the last month or so I've noticed my hands and joints are more sore than usual and the numbness I've had in my feet since August of 2002 has acted up again. As far as eating goes, please take Ensure every day, even two a day and drink alot of Gatorade to keep from being dehydrated. Those two things really kept me from becoming too weak. Even if you eat small amounts of food, eat frequently, like 5-6 times per day. Any thing you get in your system will help you get strong. Hagen Daz is great stuff! I hope things improve for you soon. Let us know, ok?

Joanie

[J.C.]

Sorry about the hard time you are having,

Many small meals a day of anything that

may appeal to you and plenty of liquid

may help with the nausea.

Keep us posted on the progress.

J.C.

[Cindy RN]

I am so sorry you are feeling so lousy!!

Remember ther effects of that treatment last for a long time after the last dose.

ASK for anti-emetic drugs-zofran (the best) and compazine (very good) to help with the nausea,

Cindy

[Rachel]

Bev,

After all my rad treatments I had late side effects of nausea, and very bad memory & fatigue. I am just now beginning to get energy back. be patient it will come.Zofran works well for my nausea, haven't had much luck with the compazine. I am now taking a pill for of chem called Temedor. I tend to wake up nauseous. Only 2 more rounds of this. Good luck to you. Rachel

[palm]

I finished 15 days of PCI two months ag, and I think the side effects are worse now than they were 2 months ago. Extreme fatigue, nausea. Zofran is good. My Radiology/oncologist said there is no reason for me to be nauseated at this point, and I should be getting over the fatigue. However, my oncology nurse said sometimes these symptoms can last up to a year.

My husband has been very supportive until he hears these doctors say I shouldn't be having these problems. He tends to think it's psychological and even asked the doctor if it could be. Doctor said it could be. Just what I need on top of feeling so lousy. A husband & doctor that think I'm goofy besides.

When I hear these other postings saying they are feeling the same way, it makes me think maybe I am not crazy, although I am sorry for anyone else to be going through the same. I may hve to start chemo again next week, and can hardly tolerate the idea feeling the way I do with this other stuff. Sorry to sound so dismal. I have been very optimistic until now.

[schmaydee]

absolutely!!!!!

pci did exactly the same thing to me...i had 19 of 'em.....decadron (steroids)helps me a lot....2mg/day will get me by...the less you have to take the better off you'll be.....my Dr said he's never had anyone sick grom PCI for more than 6 months.....my pci's ended 12/3/2004......i still get sick w/o decadron..... ......s

[twodogs]

I had my last PCI blast in January of 2003 and didn't think I'd ever eat or get off the couch again. Food and the thought of eating anything other than ice cream and cream filled chocolate Bismarks nearly gagged me. I dropped around 40 pounds and if I could make it to the mailbox and back in one trip I thought I was doing great.

By June of 2003 I'd gained a little weight back and was strong enough to meet my friends for a fishing, drinking, story, (lie), telling trip on the Snake River in Idaho and Oregon. By November I'd gained even more weight and was able to join my brother and his sons for several local deer hunting trips.

Today my weight is maybe five pounds over what I'd like and I'm still taking Epogen shots to keep my blood counts and energy up. Many of my old favorite foods and beverages are not even appealing anymore. That hasn't stopped me from gaining strength and weight though. You just find new favorites.

In any case, things do eventually get better. It just seems at the time like it's taking forever.

Just hang in there. Things do improve.

Best wishes.