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