Steroid/herceptin withdrawal questions for you!
 

Hi wise ones,
I need your expertise.

My Situation:
- tapering off dex 1mg per day (second time doing this, but having a worse time this time around)
- last herceptin was in March (off due to low EF and probably will not go back on)
- on heart meds (just started a new one. So new, I don't even know the name of it *blush*)
- I'm on ramipril for my heart as well and tamoxifen

SO...... I've been feeling like poop. I feel like I'm in chemo again. My homeostasis is WAY off. I feel like I've been boozing outside all day long. Or maybe I feel like someone has punched me in the face, and injected my eyeballs with sand or kitty litter. I'm tired. My brain feels dirty, and most of the time I just want to say "HUH?" lol

Am I feeling this way because of the drugs and withdrawing from them mixed with a side of estrogen sucker and blood pressure downers?

Help from you:

I'm looking for my peeps out there to tell me their side effects from coming off herceptin and decadron.

Any help would be awesome!

Thanks, Jill xo

Re: Steroid/herceptin withdrawal questions for you!
 

Jill,
I am so sorry you are having these problems. Were you taking the Decadron for brain swelling? When I had only Herceptin and Tykerb (I was in a study), I did not have any steroids or nausea meds.

Decadron did cause me to develop cataracts which had to be delt with after completing all treatment. Steroids are wonderful medications, but they do come with a price. I had none of the symptoms you are having when I came off Herceptin and Tykerb. My diarrhea just went away. I suspect you are having problems related to the Decadron. These will lessen with time. Good luck.
Sandra

Re: Steroid/herceptin withdrawal questions for you!
 

I am taking a break from herceptin after being on it for almost 3 years, and I have had no side effects from coming off of it, except good ones- no runny nose, more energy, etc.

Hope you find out what's causing these symptoms


Laurie

Re: Steroid/herceptin withdrawal questions for you!
 

Jill...
This sounds exactly like what I deal with daily...every time we start to wean. Call the docs so they can decide if you're weaning too quickly...or if you should just tough it out. At least...that's what I always do. :)

Liquid tears, the eye drops, help the scratchy eyes. Lots of brands out there.
I haven't found anything that relieves the other symptoms...wobbly, poopy, and huh?!
Sorry you're feeling yucky!
Denise

Re: Steroid/herceptin withdrawal questions for you!
 

What Denise said...went through it every time I dropped my dose in my weaning process. Even after being completely off them now for a few weeks, I don't feel up to par. My chemo nurse told me it could take 3-5 months to feel back to "normal", whatever my new normal is at this point. I've been off the dexa now for six weeks maybe, and I already notice a HUGE difference as far as energy and muscle weakness, etc. Its getting a little better every day. So hang in there...its going to get better! :)

Re: Steroid/herceptin withdrawal questions for you!
 

Thank you ladies! I appreciate your feedback and experiences. I am also on this beta blocker for my heart (I know the name now :)) Carvedilol. Anyway, I read that this drug causes back pain, check! red eyes/burning, check! Fatigue, weakness, faint feeling, check, check, check!
At this point, I don't know what is causing what, so I've decided to wean off of this heart med. My decision. I'm already on ramipril. I just hate being on so many drugs! argh, what are we to do eh? A constant battle with the drugs, everyday.
and why does every single drug out there "may cause blurred vision"??? huh? this drives me crazy, because all I want is to get my vision back and these drugs could be making it worse. booooo hooooooooo huh? lol
xo Jill

Re: Steroid/herceptin withdrawal questions for you!
 

Just an FYI - I figured out what was making feel so crappy. I am on Carvedilol, a beta-blocker. Needless to say, I'm weaning off of it now. I feel like I don't really need it, after I've done some research. After the way it made me feel, I'm happy with my decision. My EF was 50%, and most people come off of beta blockers when they get to 50%.
Steroids will be done as of tomorrow. :) yay yay yay!!!

Re: Steroid/herceptin withdrawal questions for you!
 

Hi Jill, I am also on Carvedilol and Lisinopril due to low EF. I have been on these two meds for 5 months and the only side effect is some fatigue.My EF was at 40% now it's at 60%. It has really helped my EF and doctor said I may be able to go off meds if eccho stays normal. Good luck.

Re: Steroid/herceptin withdrawal questions for you!
 

Hi Jilly,

Bet we all can relate to much of what you're feeling. I know I sure can! And that is sucky. So sorry. Just trying to help you figure it all out, for what it's worth.

Where to begin? I'll start w/what we have in common. High blood pressure. From before bc, in my late '30s. Took a while to get a doc to take my bp seriously. They'd take bp in office and find 165 over 90 and say, You're probably nervous. NO. They'd take it again after we were done -- still high. Still in denial. Long story but I finally got put on Coreg (Carvedilol). I became 120 over 80 right off.

After a # of yrs at my chemo appts the nurse would always take my bp and noted I was creeping up a bit. 140 over 90. I consulted w/cardiologist. He added Vasotec at night. And that brought me to normal once again for many yrs...

I looked up the possible side effects of Carvedilol and for Ramipril. SAME. Woozy, foggy, spacey, fatigued, out of it. This is pretty much how I lived my life for a seriously longgg time. But I haven't had a heart attack or a stroke, so that's the good news. (I also take 2 -- 88 mg aspirin ev night...)

I love Coreg and Vasotec. My heart is strong.

I have been taking Argenine since '98 to keep my EF at 50 so I could continue on Herceptin. Recently the company stopped making Perfusia (aka argenine) so the apothecary (hooked up to my NY nut onc) told me to take this new one approved by the doc. They keep a list of his patients and are on the ball.

My EF has risen from 50% to 65%. I feel strong!!!! (The dosage is a bit higher and seems to be working amazingly.)

EYEBALLS THAT FEEL LIKE GROUND GLASS IS IN THEM. During and after Taxotere this is what I experienced. Saw 5 ophtho guys. Plugs, surgery (to be avoided), steroid drops (big mistake)... Bottom line -- use saline eye drops (Bausch & Lomb Soothe are the best). You can use as much as you want cause it's saline. Feels soooo soothing!!!!!!!! In the beginning the last ophthalmologist told me my eyes were not just dry -- they were/are very very very dry. So he started me off with using the drops every hour!! I would do it, check the clock and keep on. After a few wks of that, I went to ev 4 hrs around the clock, esp after sleeping (w/eyes closed obviously). Now I am just first thing in the morning, last thing at night, and if and when I have to go to the bathroom in the night. These drops come in individual vials (4 to a bunch) 28 to a box. Fabulous! Cannot live without them. They are by my bed, by the toilet, by my desk, in my bag...

FOR THE WOBBLY, POOPY -- I cannot live without B-12. 3,000 sublingual ev morning. I tried going off recently and I felt exactly like you are describing. Life was a blur. I couldn't think straight. And, I had zero energy. After 3 days, I'm back on and back to good.

Also -- do you take LUTEIN? 6 mg. w/Zeaxanthin 300 mcg. It is supposedly for macular degeneration -- which I don't have! -- but when I started taking it I found it improves my eyesight and it stopped a 4 mnth tearing from my right eye (cause that tear duct was clogged). The ophtho guy (who I love) said he couldn't clear it and wanted me to see a specialist for special surgery to open it up.

The tearing stopped coincidentally w/his trying and w/my started Lutein. I canceled the surgery. Just important to share I think.

Humungous apologies for the length of this, and all my posts. Guess I have a lot to say. HOPEFULLY HELPING!!

Also -- FOR THE RECORD -- going off of Vit H after 10 yrs, just made me feel less tired, but still in need of B-12.

The bathroom drama continues, but I have made major improvements in that area -- for those who are interested. It's funny, Jilly, when I read possible side effects -- they ALL say -- could cause diarrhea! Welcome to my world. That's "my" issue.

I hope you start feeling better dear Jilly. We're all here for you. Doing what we can to get you back to being you...

Love and hugs,

Andi

Re: Steroid/herceptin withdrawal questions for you!
 

Thank you my ladies for the Coreg info. I do believe it works, but I know that every time I was taken off herceptin, my heart went back up on its own, before I was ever put on Coreg. I will ask for another muga soon, to see where I'm at.
Andi, it's funny you even brought up Lutein. I went to the natural food store the other day with a piece of paper with that word written on it. LOL I didn't pick any up, as my problem is in my brain. I mean, I'm sure it's great to take none-the-less, but I wasn't sure if I should take it. I needed to do more research.
I do take B12 daily. That and zinc, vit C, Omega369, vit D3, multi. But I do question the aspirin though. I asked my onc about taking it daily (as I've heard it works wonders for bc pts) and she didn't want me to take it, because she's afraid of bleeding due to my brain issues. I'm not sure what to do about that. I only took it twice.
You know Andi, I have been feeling better. Other than some throat and neck pain, I feel pretty good. My energy is a bit better. The lower dose of Coreg is better for me, but I'm still tapering off. I think I will see another cardiologist though. I really want a second opinion. My cardiologist had been my dad's cardiologist too, and I had an opinion of him before I even met him. I tried to give him the benefit of the doubt, but I've had a hard time with him. He thought I had a tumour in my heart, and it ended up being my port. argh! I even thought that's what it was and reminded him that I had a port during my pre trans esophageal echo (down parascope) procedure. It was AWFUL!!!
Anyway, I know that I would need a different cardiologist to tell me to go back on Coreg in order for me to do so.
It's true though about the s/e being diarrhea eh? That's poopy! ;) That is one thing that I haven't had trouble with. Knock on wood.
Thanks Andi for all your info regarding my issues. I really do appreciate it. You seem very wise. Love it! Happy you are in my life. xo
It's so very nice and thoughtful of you to take out the time for me. Really. Thank you a million times.
Oh...and thanks for the advice on the eyeballs. My eyes are better as well, but I do have some normal saline around, in case it gets bad again.
Thanks a mill, Jill xoxoxo

Re: Steroid/herceptin withdrawal questions for you!
 

Hi Jilly!

Just wanted to add that when I went on Coreg (changing cardiologists) the new doc commented on the current drug I was on, saying, They still make this?! I didn't think you could still get this. Expect maybe at the Smithsonian. I knew from the getgo I liked him.

He switched me to Coreg. But he started me on a low dosage and very slowly increased till my bp registered normal. You mentioned weaning off and it reminded me that we have to start w/lower dosages and see what our body has to say about that.

EYES -- I saw the Lutein cardboard mini billboard in the ophthalmologist's waiting room. I read it and I checked it out on line. Though it says for macular degeneration, which I don't have, it has helped -- stop my 4 mnth constant tearing out of my right eye, and has helped in general w/my eyes.

I first got the product from whoever the heck manufactures it, but checked out the dosage of both Lutein and the Zeaxanthin (silly name I never heard of). I double checked on line and found that at Vitacost there's a slight increase in the Z thing and I went for it.

Soooo glad to hear you're feeling better. And glad that you do B12, cause after yrs of being on it, when I stopped, I felt the way you were describing, which was reminiscent of me going off of Taxotere. The -- it'll take 3-6 mnths for you to feel right again, was wayyyyyyy off for me.

What's the throat and neck pain from, if you don't mind my asking?

Re zinc -- only 30 mg a day, or your belly hurts. And selenium seems to be really important I keep reading and hearing.

I take only 2 88 mg aspirin at night, but w/your history it may not be a good thing.

I hear you re cardiologist. My old one was -- older -- and excellent -- and truly caring, but the newer younger doc is more the right fit for me.

You know, I developed fluid around my heart (and lungs actually) w/Taxotere. When I went off, the fluid around my lungs went away -- which helped me breathe better. The fluid around my heart is minimal to small and remains so. I get now annual ECHOs, having ev 6 mnths for a # of yrs -- to check it out and make sure it stable.

At one point, my cardiologist asked if it was all right if he called my onc. He wanted to do a procedure in the hosp to see if the fluid had any ca. Onc bowed to cardiologist but -- Paul was uncomfortable, asked our friend/doc who said, don't go there /risky / not necessary -- and here I am all these many many yrs later, still with minimal to small fluid around my heart and STABLE.

Surprised your guy didn't pick up on the port thing. We have to watch them, even the really good ones. In the end -- WE are the head of our Team!

Make sure your saline doesn't have any preservatives. I learned that, so am sharing with you and anyone dealing w/that issue.

You're a sweetie, Jilly. I too am glad you're in my life!! Thanks a mill Jill, you are pretty awesome...

Love,

Andi

Re: Steroid/herceptin withdrawal questions for you!
 

Jilly, and all who may be interested -- please check out my WHY I TAKE SUPPLEMENTS thread.

I just posted today about a supplement that crosses the blood/brain barrier and may be useful to you.

Always thinking of you ladies, always with love,

ANDI

Re: Steroid/herceptin withdrawal questions for you!
 

I had no side effects or issue's at all!!!