Can I tell you my good news & ask a ?

DeborahNC · 05-19-2006, 12:28 AM

My brain MRI was normal. I have been plagued with vision disturbances, balance problems and dizziness for weeks and was terrified of brain mets.

I asked my doctor if he thought Herceptin could be the culprit and he said he really didn't know. He suggested a Herceptin holiday to see if the symptom resolved after a time. Even the neuropathy from my Taxol treatment that I thought was gone has come back in my toes and fingers.

Has anyone else done Herceptin holiday? I've heard of the chemo holidays.

I really don't know what to do. My QOL is suffering, but I'm not sure Herceptin is to blame.

Any input is appreciated.

Sheila · 05-19-2006, 04:22 AM

Deborah
I have not but many on this site have taken a break for various reasons. Just remember, I believe you must take the reloading dose when you go back on it!

Hope this break gets you feeling better....everyone seems to react differently to it. This should give you the answer.

tousled1 · 05-19-2006, 08:43 AM

Deboarh,

Glad to hear your brain MRI results were good. I always like to hear good news. Good luck to you.

R.B. · 05-19-2006, 09:57 AM

Please look at the posts on omega three and six, fats, brain health etc.

Use the search on the purple bar above right.

You might like to print bits out and take them with you to your advisor if that would help.

Murine trials have shown that DHA is taken quite quickly into the brain if it is deficient.

It might help - I would be interested to know as well.

If you have already got this covered I would be interested too.

Please do talk to your advisors about any dietary changes.

RB

lexigirl · 05-19-2006, 04:20 PM

I don't know about the herceptin holiday, but wanted to say that I am so very happy that your brain scan is clear!! That's great!!

Lexi

Lisa · 05-19-2006, 04:51 PM

Glad to hear your brain MRI was clear! Considering the symptoms you've had, have you had a PET scan or a CT of your spine lately?

Love and light,

Lisa

al from Canada · 05-19-2006, 05:30 PM

Dear Deborah,
Linda had almost lost her eye sight and we narrowed it to taxol. I think the side effects of this drug haven't been explored fully. Great news about the brain scan.
Al

lucky4x · 05-19-2006, 06:34 PM

I have not heard of taking a Hercpetin Holiday... but quite frankly I would be too afraid to. ( Just me) But I am doing so well, that it would scare me to change it. Right now its what is keeping those little monsters away!!

As for YOU... I think it's wonderful that your MRI was clear!!!! YaHOO!

Just another thought...

How about Thyroid? Have you done any testing done for that? I had hardly any feeling in fingers a while back and my toes were freezing all the time... I also had a LOT of dizziness... and it was Thyroid. I ended up on thyroid meds... but thats nothing... compared to the alternative.

Something to think about.

Again...Congrats on your great news!
Lucky

MCS · 05-19-2006, 09:14 PM

Vacation fr herceptin. Only if circumstances warrant it, such as low muggas etc.

There are several of us here that have done that.

I am expereincing dizziness also, which never had under ac or taxol. I will bring to doctor.

I agree with Al. Taxol is awful, just awful

Another thread mentioned dizziness as side effects of herceptin.

Happy to know brain is clear,

God Bless

XO

MCS ( maria)

al from Canada · 05-19-2006, 09:28 PM

When reading through this I think we have to deliniate which one are Q of L limiting, which are just a pain in the ass and which we look for. If your symptoms fall in the bottom 2 cats fall into the "it's worth it" cat. If it is in the Q of L cat, there are some solutions available for specific symptoms. Bottom line, herceptin is possibly the lease of all the cancer evils. So we come to a cruss roads, (and I appologize in advance for my Canadian bluntness) if you must stopp herceptin because of dose limiting effects, chances are that you will reocc, albiet very quickly. If you are getting hung-up and the pain in the butt symtoms, consider this: that stress willalso interfere with your treatment which may reduce your survival.

Maybe what we need is a matrix of side effects and solutions.
Al

sassy · 05-20-2006, 03:46 PM

Ithink a matrix of symptoms and solutions would be wonderful--most helpful to all--could we set it up?

Sassy
________
Laguna Heights Condos Wong Amat

al from Canada · 05-20-2006, 03:55 PM

That's do-able,

If you were to list a bunch of side effects, I could offer some remedies up for discussion and input and when it's all said and done, we'll publish it into a readable matrix or list.
Al

DeborahNC · 05-20-2006, 04:29 PM

I think Al's suggestion is great and I'm grateful for his input! I haven't looked yet, but starting a new thread would be ideal. You're not blunt, Al, you're straight to the point which is nothing to apologize for in the least.

The vision trouble I'm experiencing would be in the 1st category affecting QoL. I'm seriously afraid to drive at times.

I haven't had any thyroid or spine testing done recently so it will be something I'll bring up next onc visit.

lucky4x · 05-20-2006, 07:45 PM

What is QofL?

Al... sorry for your loss. I haven't been around much, in and out of the site, and trying to keep up with life, 3 kids, hubby and all the while making sure mets. is still under control.

(I am also in Ont. Can.)

Lucky

al from Canada · 05-21-2006, 10:35 AM

Lucky, I think thats a great name. I hope it serves you well because if I'd adopted that name, I'd laugh myself to sleep at night. (pardon my dry sense of humor).

Q of L = Quality of Life. I look at side effects belonging to 3 categories: 1. pain in the ass, 2, dose limiting ie, you have to reduce the doseage of a drug because the side effects are either life threatening or or other and 3; those that are not life threatening but do affect quality of life (but a par for the course for that drug) I think we need to focus on the Q of A ones as those are probably the most controlable from our perspective.
Al