I don't feel well

CoolBreeze

I don't know where to post this topic, since I belong in so many of the categories.  I figured my home is here with the HER2 gals, even though this isn't a very active forum.

After chemo ended March 31, I got my energy back quickly.  Then I was put on tamoxifen and many know the SEs of that drug and I have most of them.   I'm still on herceptin until December and won't have my reconstruction surgery until November for complicated reasons involving a doctor I should sue but won't.  I don't experience any SEs from herceptin and while the TE is uncomfortable to slee on, I'm as used to it as a person can get, having had my last fill back in February.

I have energy to do my job during the day.  I'm the principal's secretary at a high school and it's an extremely busy job.  I work extra hours even.  But when I get home, I'm done. It's even hard to pick out clothes for the next morning but I have to or I'll be late (and school is four minutes from my house).  I always was the person who goes to sleep at 11:30 and maybe 1:00 a.m and now if I make it to 8:00 it's a miracle.  My family sits down to watch an hour of TV together a night and I fall asleep every time. 

My bones ache - tamoxifen.

hot flashes - tamoxifen.  

can't remember anything - chemo

Feeling super tired even after a good nights rest?  Don't know. 

My feet swell up, even when I wear flats.  They were spilling out of my shoes today, and i weigh all of 98 pounds.  I'm not retaining water anywhere else.

 I'm having dizzy spells.  Which sounds alarming until I tell you I've had them since I was 18 as part of a migraine syndrome.  Botox, oddly enough, stopped the migraine-related vertigo.  However, chemo put me in menopause and my migraines, for the most part, stopped.. And, I redid my botox after a year off, but still get dizzy.  Don't think it's brain mets as it's exactly the same as I've always experienced.

My blood is still not normal.  Doctor just did a fetal occult blood check to see if anything is where it's not supposed to be, no results yet but I expect nothing scary.

I also take percocet for bone pain.  I am not a newbie to pain meds having taken them for years for migraine but maybe chemo made my body less tolerant?

I can't figure out why I feel so bad, so tired, so achy.  After five months past chemo, I should feel better than this, I think.

So, where do I post this?  The tamoxifen thread?  The chemo section? The recurrance thread?  Each place I choose, I'd get a different answer..

Maybe this is just my new normal, but if so -   i want my old normal back.

Can anybody relate and did anybody improve? 

I 

mmm5

OMG 

I could have written this post and I am a year past you. I feel so crumby sometimes that it has led to worry about mets but scans and everything always checks out.  I quit work and took pt disability for awhile because I felt so crappy. My ONC puts it down to going through immediate menopause and being young it is very hard on your body to go through instant estrogen deprivation. I went on a mission with exercise and that really helped but then my WBC's have never returned to normal, the fatigue and how I feel in the morning never returns to normal and I ache all over. It is depressing so I went on Lexapro that really made me feel better for awhile then I had SE's from that and just wanted off. Now I am trying very hard to work with a doctor that is a rheumotologist but also has Naturopaths on staff. There seems to be something to a year of chemo, which I am sure you have had, then early instant menopause and being younger. I am working with them now and hope to have some relief. I will let you know have another appt tomorrow. There are times when I feel so bad like I have been hit by a truck, almost like the flu and I can not figure it out. I hope more people come here to post as it is helpful to compare notes.

PS I had dizzy spells too.... not brain mets 

CoolBreeze

Glad I'm not alone.  I'm not concerned about the dizziness.  I'm a little concerned about the foot swelling.  I have no clue why that would happen.  It's really weird how big my feet get by 3:00 and how they overflow my shoes. 

I''m sure I'm not pregnant.

Also, my nails are super weak.  They got stronger and I put gels on.  Shouldn't have, they are back to being paper thin.  I guess I won't do anything with them until I'm a couple years out.

dlb823

CoolBreeze ~ I'm not Her+, so can't comment on that, but I can tell you that 2 years out from starting chemo, I am just beginning to feel more like my old self.  I had rads after chemo, then Stage II Diep surgery, so was still in "active" tx until 10/09.  But I'd say, as much as we think we should be better a few months post-chemo, that's just not the way it goes for many of us. 

Also, in reading through your story, have you had your heart function checked?  The extreme tiredness, swollen ankles... I don't know, but I think I would want that checked.   Another thing you might ask your onc about doing is taking a little break from the Tamox, to see if it makes any difference.  I've read here that sometimes after a break the SEs aren't quite so bad for some when its resumed.

But believe me, 5 mos. is not nearly long enough to be back to your old self -- not after all we've been through.  Deanna

swimangel72

I am only now getting my energy back and it's because at the start of the summer my onc gave me a "vacation" from Arimidex. The energy returned after 4 days off the drug - but it took over 4 weeks for my joints to start feeling better. Unfortunately the vacation is over - I'm supposed to be back on Arimidex - I just keep putting it off. I heard that Tamoxifen can also cause exhaustion.......doesn't help that you're still on Herceptin - I really didn't feel normal until my year on Herceptin was over. One of the other common SEs of Herceptin is thinning finger nails......mine were a mess, but came back strong 4 months after I was finished that drug.

I also work in a school - I'm a Computer Aide in a middle school and after working late, I'd be lucky to just eat dinner and flop into bed back when I was still on Herceptin. The good news is - you WILL feel better once you are done with that drug.........hang in there!

As for your dizziness - I suffer bouts of vertigo too, but mine are caused by a crystal that gets loose in my ear - it's called "Benign Paroxysmal Positional Vertigo (BPPV)" and can be caused by any whiplash to your head (mine was caused by riding old wooden roller-coasters) - but many cases are caused by aging. Here's a video on YouTube showing the Epley Maneuver which really cures my vertigo (I've also learned to sleep on my left side only - if I sleep on my right side I end up with vertigo because the crystal gets out of position):

Epley Maneuver on You Tube

Perhaps your vertigo is no longer being caused by the migraines...........an ENT doctor could help diagnose if youhave BPPV.

One other suggestion that might help - I remember how once I was so exhausted I felt extremely ill - I thought I was gravely sick...........a wonderful nurse gave me a magic potion - "Gatorade" - she told me my blood work was fine (this while I was on Herceptin) but I was "slightly" dehydrated and Gatorade would help. I went home, drank an entire bottle and within an hour felt incredibly better..........so be sure you're not dehydrated (especially working in the school. Keep a water bottle and/or Gatorade on your desk and GUZZLE it frequently).

I hope these thoughts help you feel better soon!

BlessedOne2

CoolBreeze, I am concerned because you are on Herceptin.  Have you had an ECHO or MUGA scan to test the effect of the Herceptin on your heart?  If your ejection fraction has been lowered, this could be adding to the fatigue that is a result of the chemo.  The swelling in your feet is also something that you need to get checked right away.  

I'm just 8 months post-chemo, 6 months post radiation. I had to discontinue Herceptin due to its effect on my heart.  Medication has helped greatly to boost my ejection fraction back up, but I will have to take it for quite some time.  

Hugs, Wanda

shadow2356

Cool Breeze- I could have written your post myself. I am feeling EXACTLY like you. I am not on tamoxifen since I am ER/PR-, but I am on herceptin.

I finished my chemo around the same time as you. It took a lot longer to recover from the last one but I did start to feel better. Now I am having extreme fatigue and muscle/joint/bone pain. I did some reading and all of that can come from the herceptin. Of course I always worry that it is in my bones now. I am going to see if they want to do another bone scan.

I had a MUGA scan yesterday. It takes awhile for the results. In the meantime I need to figure out a way to get to Dec when I will be finished with the herceptin. If you read the side effects (there is a post here) you will find that a lot of people have these symptoms.

I pray that my symptoms are not progression, but when I read about others on herceptin having the same thing it does ease my mind a bit.

Good luck to you!!!!!!!

HER2too

Coolbreeze,

All of what you are experiencing is/was felt by many of us.  I read that the recovery time is the same amount of time spent going through treatment - so for me it would be 15 months AFTER I was done with Herceptin - not including the added SEs of Tamox or an AI.  I am more than 3 years out from treatment (but still taking Femara) and don't feel completely normal yet.  I know that it is frustrating, but listen to your body and if it tells you bedtime is 7:30, so be it.  Try to be patient and give your body the time it needs to recover.

CoolBreeze

I do have MUGAs every three months - my next one is in October.  So far, all have been good.  I have an onc appointment next week so I'll bring up the foot swellng with him.   He may want to up the MUGA.

I've only been on tamox four months, so I am not sure about a break yet but my opening salvo with each onc appointment is "I hate tamoxifen" so he knows I have trouble with it.   

I'm a water junkie but don't like gatorade because it's too sweet.  Is there sometthing that gives you the other stuff that isn't?

I'm not worried it's in my bones - because if so, it's in ALL my bones.  That's not likely so I think it's the tamoxifen SE.  

Thanks for the top on the dizzyness.  I was never properly diagnosed so Ill check that out.  It usually happens when I'm sitting there doing nothing - bam!  My world whirls, but only for a minute or so.  It started when I was 18 but I was having migraines all my life so once everything else was ruled out, I just assumed it was part of the migraine syndrome.

Funny how I can muster the energy to work a ten hour day but when I get home, all I can do is sit and ache.