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

Re: Dizziness Question
 

Hi Greg ! Good to hear MJ is now feeling better ! I don't mean to be rude or pushy but i would still go for a brain scan just to be on the safe side. You can never be too careful with cancer. Why is MJ getting off Xeloda? My doctor prescribed me 4 cycles of Xeloda and i am on my last cycle of Xeloda. We will be looking at surgery if the scans are good. He did mention that having surgery does not mean i will be off the drug. My fiancee although very shocked at my fast recurrence is somehow" happy" and feels safe when i am on treatment.

Re: Dizziness Question
 

Hi YanYan,

Thanks. MJ started her fourth cycle of Xeloda/Tykerb yesterday. She usually feels pretty good until the second week, especially the last couple of days.

I've mentioned a brain scan to be on the safe side, but she wants to limit the scans she is getting. Since she has no symptoms of brain mets she doesn't feel there's a need at this point. I was getting concerned with her two incidences of dizziness and falling down, but they haven't occurred since then and can be explained as caused by other things. She never has headaches or any kind of pain like that. It seems from the reading I've done that most get brain scans only after symptoms arise? Has anyone reading this gotten an MRI without any symptoms?

The oncologist wanted her to stay on Xeloda for 6 cycles but it was all he could do to convince her to do 4. She really doesn't like it as you can tell. Honestly, she has no known tumors. All were removed in the original treatment and then the hysterectomy removed all the other known tumors. There's no real way to know if the Xeloda has done anything. Nothing to watch regress or shrink. All that can really be proven is if it didn't work and something shows up on the next scan. She will continue Tykerb as long as it works. I know Tykerb was approved only if combined with Xeloda. I'm not sure how that will work going forward. If the oncologist is required to prescribe both or if he can just prescribe Tykerb alone. I guess there is no way to prove if the patient is taking their Xeloda every day or not so I guess you can just get it filled and not take it? Has anyone else reading this gone to Tykerb only?

MJ is kind in between being able to use either T-DMI or Pertuzumab. She's only had one failed Herceptin treatment so can't be on T-DM1 trials (that I'm aware of) and because she had the Herceptin already, she can't get Pertuzumab(or if she can get it, it may not be covered by insurance. Kind of between a rock and a hard place for now. I'm hoping of course the Tykerb does it's job. At least until T-DM1 is on the market.

Thanks again for your reply. I don't take it as rude or pushy. I'm on here for advice and pass it along to her. She doesn't like to come onto these forums so I do that for her.

I hope your treatment continues to get rid of those skin mets.

Thanks,
Greg

Re: Dizziness Question
 

Since Tykerb causes diarrhea and diarrhea can cause dehydration and dehydration can cause dizziness/low blood pressure, how about making sure MJ doesn't get dehydrated if she gets diarrhea

Just a thought

Re: Dizziness Question
 

Dear MJ's Husband

MANY of us here have come up with brain mets with NO symptoms. I am only one example of this.

Since I became stage IV, my med onc was ordering a brain MRI annually even without symptoms. He would come up with some reason to satisfy the insurance. His experience with HER2 patients told him it was only a matter of time before I could also have brain mets, even when NED in the rest of my body.

Thus, my two brain mets (one was even 3 cm) were caught in my routine screening.

Also, as for wanting to limit scans, an MRI is done without radiation. (Magnetic Resonance Imaging). A person can have all the MRI's necessary and not add to a year's total radiation quotient.

A brain MRI is much more precise for detecting even very small mets that a CT would not find.

To be on the safe since since MJ is stage IV, getting a brain MRI would give you some peace of mind and get a baseline into her chart.

Re: Dizziness Question
 

Thanks Stephanie! This is what i really love about this support group - Everyone is so loving and supportive, yet respectful of other people's decisions !

Hi Greg ! You are right there is no way to know if a patient is taking xeloda or not. I remember someone posted that her oncologist has to prescribe them together but its between them that she is only taking tykerb. Like you said since there is no tumor left, we dont know if they are working or which one is working. I guess routine scan and tumor marker testing would be a good way to monitor.

I feel MJ is probably in denial of her recurrence. She is doing a lot - exercising to prove she is strong and that she can beat it. She does not want to come to the support group so she does not have to be reminded what she is dealing with. Maybe when she is more peaceful about the cancer reality, she will be more open to treatment options and support groups. But no matter what decision she makes on her treatment, i wish her the best !

Re: Dizziness Question
 

I'll third or fourth or whatever that brain MRIs don't require radiation...and it seems like some dizziness is enough reason, even if there are other explanations. And take this from someone who ignored brain symtoms way too long. BUT, if I had it to do over, why just not get an answer! Good luck figuring it out!

Re: Dizziness Question
 

I just thought I'd weigh in. In January, I had a few blurry vision issues, and my doc sent me for a brain MRI, not really expecting it to show anything. It came back that I had nine very small lesions, and I had 13 WBR treatments and then started Tykerb and Xeloda. It was terrible. I did not tolerate Xeloda well at all. I was sick as a dog. A lot of vomiting, a ton of nausea, could not eat. A lot of diarrhea that I had troubles controlling with lomotil and immodium, diet changes, etc. In about three months of all of this, I lost about 32 lbs and had to get fluids multiple times a week for dehydration. Scans showed that the Xeloda had mixed results anyway, so my onc took me off the of the Xeloda and kept me on Tykerb and Herceptin. I was still very sick on the Tykerb, and after trying everything they could, they put me on 4mg of dexamethasone every 8 hours to help with the appetite and nausea. It did the trick. And my last brain MRI showed only one lesion left out of nine, and it's only 2 mm and shrinking. I would say definitely request a brain MRI, but the Xeloda and Tykerb combo was extremely nasty for me, worse than any of the chemo combos I've been on, and it made me really sick and sometimes dizzy. I went down in the athroom trying to dry off a couole of times, thankfully i was bent over slready and could kind of catch mysself! I really hope things have gotten much better for you guys by now!

Re: Dizziness Question
 

MJ is having trouble tolerating the Xeloda today on the 3rd day of her fourth(and last) 2-week cycle. She didn't have very many issues with the other chemo treatments she's been on (besides hair loss). I don't know why Xeloda is so rough on her. She's definitely not a candidate for long-term Xeloda/Tykerb treatment. "If" she can get through these next two weeks taking the Xeloda, we are going to push for getting Tykerb/Herceptin. Even though Herceptin stopped working before, so many have said it could work again in combination with other drugs, due to a synergistic effect.

I will encourage an MRI with the CT/Pet scans in September. Do you know if there is a very long time period between brain mets appearing and when they cause symptoms? I would think it would be a short period of time. Is this an incorrect assumption?

Thanks again for all your comments. They are invaluable.

Greg

Re: Dizziness Question
 

Greg,
Was MJs last scan in October 2011? Or did you omit one?
Thinking of you,
Karen

Re: Dizziness Question
 

Thanks for thinking of us.
MJ did have a CT scan in March. She was having a lot of pain in her lower right back and abdomen. She was napping one day and I saw her shaking and put blankets on her but it wasn't helping. When her teeth started chattering I took her temperature and it was around 104 so I took her to the ER. She ended up having a kidney stone and an infection in her ureter. Because she was a cancer patient they ordered a CT scan, which didn't reveal any cancer. She did end up with sepsis(104 fever, 400 white cell count per microliter, scary low blood pressure). The ER doctors and later the ICU doctors said it was very important that she got to the hospital when she did. I read into that as a "close call". I will update my signature to note that CT scan.

She has not had a PET since October. Even those scans didn't detect the metastasis to her uterus that appeared in January and was diagnosed as Stage III2c already at that point(when it was first thought to be a second cancer). MJ's cancer seems to be very aggressive once it rears its ugly head. She had a mammogram a few months before her ibc diagnosis. We never felt a lump or two, her breast just suddenly became hard all over in a very short time period. The same with the uterus/cervix, fallopian tubes/lymph mets. Nothing showed in October scans but by January she had excessive bleeding to the point that she ended up in the ER. So, if it comes back, I don't expect it be slow growing at all.

Greg

Re: Dizziness Question
 

I have been on tykerb and herceptin only since March 2010. Never have taken xeloda. My 2 cents is go with the MRI of brain. I have real bad sinus issues and just thought headache was from that. I followed my gut and it was brain mets. I go by the theory of if you have a known, then you can deal with it versus not knowing and worrying all the time. The smaller and faster that you chase the mets then the less invasive treatments are. It is always your choice. The goal is changing this beast into a chronic condition, that it is there, but it does not Dominate your life. I have used Citrucel pills, to help regulate, my bowels. It actually helps when used consistently.

Prayers and Hugs out to you and your family
Darita

Re: Dizziness Question
 

I think brain mets can do lots of stuff...if your wife wants to make the test seem more normal, she'll probably be OK...if she doesn't have other symptoms. I've had one met that has been troublesome, but I let it go up to a year cause there really weren't symptoms till the end.

And for what it's worth? I didn't do real well on Xeloda either. Disease progressed and I didn't handle the side effects well. After that was done they put me back on Herceptin and later added Gemzar, and even with lots of holds for low white cell count it has been kinder and done a great job....

Re: Dizziness Question
 

We are all so different with how we tolerate treatment. I have been on the Xeloda Tykerb combo now for 5 months and with a small dose reduction the only niggly SE is the hand and foot syndrome which I am managing quite well. It knocked me out at first particularly when we added in the Tykerb but by reducing 8 to 7 a day of Xeloda and 5 -4 a day of Tykerb I am fine.
I hope MJ is feeling better soon.
Amanda x