Dizziness Question
 

Yesterday, we were at a youth football game sitting in low beach chairs and upon her son scoring a touchdown, MJ jumped up quickly and then started falling forward. Luckily, I jumped up to cheer also and was able to catch her. Then, this morning when she got out of bed she immediately fell down on the floor. She said she felt dizzy both times. Tomorrow is the last day on her 3rd cycle of Tykerb/Xeloda so she's pretty dosed up at this point. She is off Xeloda next week and then will have her last two weeks before her next scan at the end of the month.

Do you think this is a side effect of the drugs or is there possibly more at play? She's also been nauseated the past two mornings when she tried to work out at the gym (yeah, she still works out on chemo). This nausea and dizzy spells(falling down) are new this weekend. I'm not sure what to think at this point.
She is also very cranky/moody. I'm guessing that may be due to Xeloda.

Thanks for any advise.

Greg

Re: Dizziness Question
 

I cant say as have no personal experience of these drugs but if this continue's I'd ask for some further testing. I think we all get dizzy at times when we jump up suddenly but in view of her dx I'd be looking for answers if it continue's!

Re: Dizziness Question
 

I would ask for a brain mri if it continues. I don't have brain mets, but I have seen a few women post that dizziness and nausea were some of the symptoms they had with brain mets.

Hope it is just from the meds.


Laurie

Re: Dizziness Question
 

I'm impressed she can jump out of a low beach chair! I practically need a crane to get me out.

Seriously, I would encourage you to get this checked out. Most people use a two week rulr - if a new symptom persists for two weeks check it out.

Not to scare you, but you are probably aware that her2+ cancer likes to go to the brain, so my oncologist has a super low threshold for any neurological symptoms. An MRI would rule out any issues, and would probably not be a normal part of her upcoming scans.

It's probably nothing, or jumping up and down too much:). Tykerb is somewhat protective of the brain anyway as it is a small molecule that crosses the blood brain barrier, which herceptin does not.

Nevertheless, you do want to be vigilant as brain mets, scary as they are, are also treatable especially when caught early.

Re: Dizziness Question
 

I am wondering if MJ might have low blood counts. When my counts were low I would be dizzy and even fainted a couple of times.

If her blood counts are not exceptionally low, I would go with a brain screening next.

Best wishes that it is not serious.

Re: Dizziness Question
 

Go get a brain scan especially there are symptoms just to be on the safe side! Hopefully the dizziness is simply due to low blood counts.

Re: Dizziness Question
 

Thank you for the replies. We set up a meeting with the oncologist for Friday and will discuss the dizziness and I will pass along your thoughts and concerns.

MJ is not tolerating the Xeloda very well lately. She's pretty miserable on it, especially by the second week. She's leaning toward not doing the 3rd cycle. If she goes with that plan, maybe we can move the PET/CT scans from the last week of June to sooner(if possible). All the known endometrial tumors were removed with her hysterectomy so there are no known tumors to compare with the new scans. The scan will be to see if there is anything new. I don't know that a third cycle of Tykerb/Xeloda is necessary since it is more of a preimptive strike against anything new. Do you think skipping the 3rd cycle is a bad idea? I'm not sure what advice to give her. She just wants to stop being miserable all the time.

Thanks,

Greg

Re: Dizziness Question
 

Hi,
Overwhelming stress can cause dizziness. Chemotherapy regimens are the strongest drugs known to man. Combine the two and add the worry of the unknown of HER2 and there's a strong case for feeling woozy. Ativan, I was told by my doctor, helps with that. I used it-it worked.
As always, hoping for the best for MJ and your family.
Karen

Re: Dizziness Question
 

Thanks Karen. She has an unfilled script for Ativan. I will suggest she get it filled. She doesn't like to take anything like anti-depressants/anti-anxiety drugs. Personally, I would have been on them at diagnosis. Maybe if I tell her Ativan will help with dizziness, she will give it a try. I'm bothered most that she not only gets dizzy but actually fell to the floor after getting out of bed and falling as she started walking.

She tried to work out at the gym again this morning but ended up throwing up before she could even start the workout. Three days in a row of this at the gym. It only happens in the morning for some reason. We're working now on getting the visit with the oncologist moved up to tomorrow.

Thanks again,

Greg

Re: Dizziness Question
 

Maybe this regimen doesn't agree with her. Ativan is really good for the dizziness. While MJ may not want to be on meds (and I'm a no-med person, too), it's not good to put the body through undue stress either. Like all of us, the waiting is the hardest part. Till you have some clarity, I wish you peace. And Ativan!
Karen

Re: Dizziness Question
 

Thanks Karen. She has an unfilled script for Ativan. I will suggest she get it filled. She doesn't like to take anything like anti-depressants/anti-anxiety drugs. Personally, I would have been on them at diagnosis. Maybe if I tell her Ativan will help with dizziness, she will give it a try. I'm bothered most that she not only gets dizzy but actually fell to the floor after getting out of bed and falling as she started walking.

She tried to work out at the gym again this morning but ended up throwing up before she could even start the workout. Three days in a row of this at the gym. It only happens in the morning for some reason. We're working now on getting the visit with the oncologist moved up to tomorrow.

Thanks again,

Greg

Re: Dizziness Question
 

Hi Greg

Sorry to hear your wife is not tolerating Xeloda and Tykerb very well. It is hard to get hit by cancer for the 1st time, not to mention being hit by it the 2nd time so quickly! I can see why she is moody!

Her oncologist should order a complete panel blood test and this will help to find out why she is not feeling well on those drugs. She may have THey may adjust her dosage. Some get switched from 2 weeks on/1 week off to 1 week on / 1 week off.

There are days i feel very frustrated and mad about my own recurrence. But i am more thankful that i am still alive and receiving treatment. There are many others who don't have access to those new drugs. Your wife sounds like a very strong woman. Not many people can still excersise in gym while on treatment. The battle with cancer is a long fight. Sometimes we just need to slow down a little bit.

Take care (())

Re: Dizziness Question
 

I can tell you that Xeloda is not a fun drug. Monica Spencer posted a lot of stuff on Henna with lemon, add water to a paste and put it on the feet. Bag Balm and udder cream on the hands, with cloth gloves at night. Vitamin K cream anywhere there is rubbing.

Nina did not have that much dizzines, but she did have a brain met that was found with a brain MRI. Please ask the doctor to do a spine MRI as well. If there is brain and/or spine involvement, please send me a personal e-mail. Nina was found to have a large brain met in november 2009. There was surgery, gamma knife, and Xeloda/Tykerb until this past Christmas, when it was found in the spine as well as the brain. We were told to make plans for end of life, probably in three months or less. Friday we found out that there is no evidence of disease in the brain, spine or elsewhere. This method of treatment is going to go to clinical trial, but I can tell you what we did to get early approval for Nina to be treated and what we did.

By the way, Nina walked five miles a day, drove the car, worked, yoga, etc. for the past seven years. Please understand that this disease can disguise itself at times. I am pushing for all Her+ patients with 3 or more lymph nodes that were positive at mastectomy to get an annual brain MRI.

Re: Dizziness Question
 

Thanks Rolepaul. I almost forgot about the 4 painful cracks on my feet and 2 on my thumbs ! Time to wear socks and gloves at night ! I am scheduling for a brain MRI this week !

Questions for you and people that have had brain mets:
1. Is it rare for brain to be the 1st place for mets from breast cancer?
2. Will brain mets have an impact on the tumor markers?
3. If PET scan involves spine, what does a spine MRI do ? I once asked about a bone scan as i was having pressure from one spot on my spine. My oncologist said a PET scan would work as a bone scan.
Thanks!

Re: Dizziness Question
 

Rolepaul -
Such fabulaous news and way to show those mets how to behave!

My take on Yanyan's questions:

1. Is it rare for brain to be the 1st place for mets from breast cancer?
Yes, perhaps less than 10% was a number I heard a while back. Maybe that is now higher with more years out on adjuvent Herceptin.

2. Will brain mets have an impact on the tumor markers?

Depends on which markers you have drawn. I have also been having my CEA checked regularly all this time. The only time it really went up out of normal range corresponded to my two brain mets. My CA27-29 did not change more than a couple of points during that time. Which was puzzling, and the other scans were finding nothing. BTW - I had no symptoms from the brain mets.

3. If PET scan involves spine, what does a spine MRI do ?

Spine MRI will find lesions that a CT scan will not pick up.

Re: Dizziness Question
 

1. Brain mets occur if they treat Her + patients with Large Molecule drugs (Herceptin for example) after mets are running around the body. You have Dr. Eric Winer say 25-30% of the HER + women will get brain mets, and others say 5%. I can tell you if there is the number of nodes you have that are positive, that brain mets should be looked at immediately.

2. Tumor markers will rise only after the darn thing is entrenched in the brain. There are some new tumor markers that are being explored, but it is not well developed.

3. PET in June looked fine and Nina had pain in September, with a PET showing multiple hot spots 12/15/2011, and the MRI 0n 12/17/2011 showing high level of involvement. The PET is a 10 foot llook and the MRI a 10 inch look. The local MRI scan showed it just as well as the clinic's MRI. The difference was we were able to follow the progression of improvement better with the most sensitive MRI. And yes, Nina's scans last Friday showed that there was no areas that "lit up", only a background level of normal activity. The PET was also normal, confirming no disease in other areas of the body. All tumor markers are now down to normal, non-disease patient population levels.

As I say, this has not been an easy (or inexpensive) battle. The insurance company, cancer center doctors, and researchers in this disease all were there when we needed them. Now we hope to be there for those that need us. As Kevin Costner said in the Untouchables "Never give up", and James T. Kirk in Star Trk 2, Wrath of Khan "I hate to lose". We have found a way to get rid of brain and spine Herceptin involvement and want to spread the method as fast as the TDM-1 message.

Re: Dizziness Question
 

During her Tykerb/Xeloda time Hema developed Brain Mets.No dizziness at that stage.Then she had WBR. After the WBR she is facing loss of memory and occassional dizzines.But during her last bout of diziness it was diagnosed that it was due to low blood count.Have aWBC done and if it is low ask the Onc for a shot to increase the blood count.All the best

Re: Dizziness Question
 

Some people have a terrible time with Tykerb/Xeloda. It didn't work well for me...Gemzar has worked great!

My personal opinion is that Brain MRIs will become more prevalent as better drugs get rid of other stuff. I tell people if in doubt just do it! Don't try to guess. I've been dealing...well. the docs have too...with one lesion in my brain for almost two years. It's breast cancer, not brain cancer, that has spread to the brain.

Re: Dizziness Question
 

Thanks everyone. MJ has not had any more complaints of dizziness or falling down since last Sunday. She was on her final couple of days of her 3rd cycle of Xeloda. She has felt much better this week being off chemo. On Tuesday she will begin her final 2 week cycle of Xeloda and I hope she will be done for good with that drug. The second week is always a doozy for her. It really wipes her out. She will continue with Tykerb for as long as it keeps working. Herceptin worked for her for a little over a year before it stopped working so hopefully she'll get a longer run with Tykerb. Herceptin will be added back in the future if need be.

~Greg

Re: Dizziness Question
 

Greg,
This is good news. As you know Pertuzumab was approved last night, and may be an option down the road. Herceptin works with it.
Wishing you well,
Karen