Muga results question & CAT scan results

[MichelleH]

Hi everyone!

First off, I would like to thank all of you for your emails & especially the prayers. THANK YOU, THEY ARE ALL APPRECIATED!

I would like to keep you informed on how my scans came out on my treatment of Xeloda & Tykerb which I started June 5th. I just got the results last night.
Though being disappointed on the vague description given by the radiologist, but very happy with the results!
First of all............. THERE IS NO NEW METS ANYWHERE! The liver is back to normal size and normal function!! The tumors have "diminished in size". The bones are showing many places of healing!!
I told the doc I was not happy with the vague description by the radiologist and he offered to get copies of my scans (on CD) and also the horrific CAT scan in May and sit down with me to look and compare the two. I said, (of coarse) great! So we will do this at my next appt (in 3 wks).

Here's where my question comes in:
The doctor was not happy with my Muga scan. It was 50% down from 61% in January. Being I am the doc's first (maybe only) patient on Tykerb he does not know the protocol of what to do when the Muga score drops this much. 50% is the bottom of the "normal range". He said it will be either (1) stop Tykerb for a while. (2) cut back the dose of Tykerb, or (3) continue with the same dosage and monitor the heart more frequently. I told him I was rooting for #3!!!!!
I just want to know of others who have had this same experience and at what point did the doctor take action and what action did he take? I am just trying to get a feel of what to expect in 3 wks when I see him again.

My doc is also leaving, moving to Chicago:( So those of you in Chicago that may get him as your doctor he is a good doc and very willing to work with you (as you have read above). His name is Ervin Hire, He is a nice man and I will miss him so.



Marie & ED, "Keep Believing", I have faith that you will be getting similar results soon!

Love & hugs,
Michelle

[lilyecuadorian]

I'm happy that everything is getting better and I'm sure it will improve more and more until you get NED soon ....

[tousled1]

Michelle,

That's great news! Glad he's going to sit down and show/compare/discuss the results of both scans. Sorry I can't offer you any advise on the low MUGA score. If it were Herceptin you would be taken off for a few months until the LVEF comes back up. With Tykerb I don't know what they do. Best of luck to you. You're in my prayers.

[Rupali]

You need to go for regular walks, deepbreating, eat fish oil capusles, Have at least 200 mg COQ10 daily and get in touch with an alternative medicine practioner.
Talk to a cardiologist and he will put you on Lisinopril and COreg and that will do the trick in 3 weeks.

[MichelleH]

Thank you all for your responses.

My doctor's office called today telling me to stop taking the Tykerb and that they have scheduled me for another Muga scan in two weeks.

I am currently taking 1000-2000 mg of fish oil and 300 mg of CoQ-10 daily. I have started walking the last couple of nights. Lack of exercise has been a big issue for me because I have found that these drugs have been making me very tired. But I will push myself to get the exercise because this treatment of Tykerb/Xeloda have been the only thing that has worked for me so far since being dx stage 4 in December.

I just want to keep all of you updated.
Thank you again for your responses and prayers.

Love & hugs,
Michelle

[janet11]

Thanks -- I went to my primary care dr today for a BP check and she put me on CoReg CR for my low LVEF and BP. I'm encouraged seeing that others did well on it. I have my next MUGA in 3 weeks -- I'd LOVE to see improvement (since my last 3 kept sliding downwards).

[Rupali]

Dpnt worry, you will be fine now...Just keep walking and start fish oil Buy Carlsons Fish oil. You can get it at WHole Foods. And also start with COQ10

[SoCalGal]

Call the Tykerb care line and get info from them, too. My doc keeps telling me that Tykerb has no heart side effects. Did you have a base line muga before starting? Also, you said you are still in the okay range, just low okay. How many pills do you take a day? I would drop my dose down to 3 pills a day (if you are on the standard 5 pills). Also, co q 10 is best metabolized as a chewable. I take a costly brand but it's supposed to be effective made by douglas laboratories. I take 2 chews a day w/ a meal. And I don't necessarily believe my onc when he says there are very very little heart probs on tykerb. I am just passing along info to you. It could also just be the stress of ALL the chemos to this point.

I know that they are thinking that many do just fine on a reduced dose. And I know it won't harm you to take a break.
Good news - stay focused on that! Blessings...Flori

[Lala]

Michelle
Congratulations on your scans. That is Great news.
I have dropped my doses of both drugs due to other side effects not heart related. I am on Tykerb @ 1000mg and Xeloda @ 2500mg. I know some have done even lower doses. Sorry you have this issue w levf rate. I would think a little walking is good for the heart. Take it easy and Good Luck on your Muga scan.

[kat in the delta]

I am having an MRI of Brain and Bones tomorrow. I need to ask for a MUGA too..as my onc only gave me 3 the whole time on adria/cytox...then taxol and herceptin + one whole yr of Herceptin.
kat in the delta

[Lala]

Kat
Good Luck on your scans !
Thinking of you sending good thoughts.

[tousled1]

Michelle

Here is the first warning listed for Tykerb on their webstie. So I would say that if your LVEF drops below 50% they would do the same as with Herceptin when your LVEF drops.
Decreases in left ventricular ejection fraction have been reported. Confirm normal LVEF before starting TYKERB and continue evaluations during treatment

[rentrac]

MUGA results can certainly make you feel mentally mugged; mine certainy have. I started at 65% before Adriamycin and Herceptin and was down to 53-54% with the start of Tykerb. Exercise is one of the big keys to working with this stuff. It's so hot in the summer here, that the pool makes a great substitute. Just walking around in water up to your neck, playing around with someone like spouse,friend or kids by flutter kicking with noodles or doing stretching or jumping jacks can be taken slowly and give a good cardio workout without seeming as tiring. As your doctor if he can prescribe physical therapy or cardio-therapy so they can guide you in getting back in shape safely and have your insurance help with the tab. After having gamma-knife, my neurosugeon prescribed PT and it certainly made a difference in my cardiac function and overall feeling better - and my MUGA is staying steady if not possibly rising. Good Luck and DON"T DESPAIR!
warmly, Rentrac

[hutchibk]

Also from the Tykerb website..."As with other treatments for HER2-positive advanced or metastatic breast cancer, there have been reports of changes in how the heart pumps blood through the body and how the heart beats. Call your doctor right away if you are short of breath, have rapid heartbeats (palpitations), or feel very tired."

I am in process of checking in with my onc... as the last 3-4 weeks I have become increasingly tired, tired, tired. Almost like I want to remain horizontal all the time. Sorta like I ain't getting enough oxygen or blood pumpin' - wonder what we can do?

[rentrac]

I was thinking it was just me that was getting tired, tired, tired. I've been in PT trying to build myself up again, but had to stop the cardio workout because my skin is getting too fragile: blisters on my toes, split skin on heels, finger tips, etc. My MUGA didn't change significantly (at least it's not worse), but I'm now crashing and falling asleep by 8pm by mid week, and I'm only working half time. I was hoping I was just out of shape. I stopped Xeloda a week ago to see if my skin could repair some, and I'll go to onc's office Monday for them to check - if our little tropical storm Gabrielle behaves and doesn't go hurricane on us. Have you had any problems with mouth sores as well?
Rentrac

[MichelleH]

Just wanted to keep you lovely ladies updated on what going on.
I have had 2 more mugga scans
August 30th score- 50% (again!)
Sept 18th score- 52% (only up 2%)

I have also developed a cough since August 30th. It feels like the same cough when the lymph nodes in the chest were swelling with "C" (I hate that word). I see my new doc for the first time on the 25th. Thank you all for all the suggestions. It gives me ideas to suggest for the doc. I & my husband wonder what is the magic number is for when I can go back on Tykerb.
I have been stationary bike riding which I find very boring. I have also started walking which my two little ones love to do with their mom. It is becoming quite the juggling act to keep the Hand & Foot Syndrome also under control but also getting exercises done. I don't want them to stop my Xeloda as well! I find exercising hard to do cause I am sooooooooo tired most of the time. But I know (especially when I look into the big brown eyes of my two precious kids) that I must fight & fight harder.... damn it... and I will!

Thank you all for responding to my post and for all the suggestions. I love you all my warriors!

[tousled1]

Michelle,

Has your oncologist ever suggest a echocardiogram instead of a MUGA? Echos are must less invasive and give a much better overall result of the heart function. I know it seems to be a personal preference of the doctor as to which test is performed. If I were you I'd bring up the suggestion of getting an echocardiogaram --no dye used. Just like an ultrasound of the heart.

[MichelleH]

Kate,
I have a new doc now, the other has moved to Chicago. I just saw him for the first time today. He does not have a problem with my mugga score. He said "Lets worry about it when it gets down towards the mid 40s then we may have to stop the Tykerb". (I wish my other doc had that same view.) He has resumed my Tykerb!!!!!!! He has also told me that exercising isn't going to bring up my Mugga score any, because the decreased heart function is due to metabolism of the heart. I have been coughing for the past month. I have had this same cough and other symptoms when the lymph nodes in the chest were swelling with "C". I hope the Tykerb kicks it to the curb once again.
Thank you for your reply. I feel like I got a lot of big sisters here with a lot of good advice.
Keep in touch,

Love,

Michelle

Doing the Happy Dance once again!!!!!!!!!!!!!!!