PET/CT results good! next step?

Pam P · 08-31-2010, 03:47 PM

Good news - the pet/ct shows no new spots in bones some decreased in SUV values so overall 'mild improvement'. Good news despite the high tumor marker scores. So this means I am not eligible for he tdm1 open access since scan didn't show progression.

My onc. was suggesting either tdm1 or abraxane & herceptin. So he'll probably recommend the abraxane when I see him on Thurs. this week.

My bad reactions from the xeloda/tykerb/herceptin/aromosin are still a problem. Mouth sores gone, fingers some better, but the severe swelling, itchiness, and rash not better yet. Now my non lymphedema arm is swollen and hard too. I can't open my right eye all the way due to swelling.

I've been off all meds now since Aug. 16. I don't feel recovered enough yet to start back on a chemo this Thurs. I will ask the doctor to start me on herceptin again but give me a couple more weeks before adding a chemo.

Since I didn't progress on the x/t/h/a treatment I'm going to assume it was working. Which drug/s caused the severe reaction? I don't know but suspect xeloda to be the most likely by the list of side effects. Or it could have been the combo of xeloda/tykerb. I was on herceptin/tykerb for a couple of months last spring but the other meds were added due to rising tm's. I'd like to go back on hercpetin & tykerb again & see if I could maintain on it for awhile. But I have no way of knowing if the tykerb is the culprit in this reaction. It seems that if I could handle it, it would be better than zapping me with another heavy duty taxane again right now.

Here's my question: What would be the wisdom in trying tykerb again? If I was over the swelling and other reactions and started up would I have a greater risk of bad reactions? I took 1000 mg/day before (4 pills)- would dropping to 750 mg be an effective dose?

Thoughts/advice?
Thanks. Pam

Carolyns · 08-31-2010, 03:51 PM

Hi Pam,

I don't have any answers for you I just wanted to say that I am happy that you got good scan results!

Love, Hope, Peace, Carolyn

Jackie07 · 08-31-2010, 04:03 PM

Pam,

So happy to know that you've had good result from PET/CT.

Don't worry about Tykerb for right now. I suspect it's the combination of all 4 drugs that had caused the severe reaction since your signature did not indicate any side effect while taking xeloda/tykerb/aredia back in 2007-2008.

Rest well and get ready for the next battle. We are all behind you.

Rich66 · 08-31-2010, 04:29 PM

You may have already discussed this but...were you consistently providing a non-eating "window" around taking your Tykerb? Morning or night?

chrisy · 08-31-2010, 05:50 PM

Well well my dear!

Oh yeah, I forgot that sometimes increasing tm's don't tell the whole story. Not progression is always a good thing!

Not sure what I would do next if it was me. Rich is right, the not eating window around Tykerb is important since it effectively increases the dose by slowing absorption.

I'd also think it's likely to be the combination of so many things causing the symptom...but then again it could have been something else entirely. I think there may be wisdom in starting slow and adding things one by one. That could include a lower dose of any of the drugs in the mix.

In the meantime I'll be holding thoughts of your body returning to it's "normal" from whatever this reaction is. If you can regain control of that, whatever you do will be easier.

Much love
Chris

Pam P · 08-31-2010, 06:02 PM

Rich - I always took tykerb 1st thing in the a.m. I would have coffee during the next hour - the pharmacist told me that was okay - but I would not eat anything until at least an hour or more later.

ElaineM · 08-31-2010, 08:58 PM

I am so happy to hear there has been some mild improvement in the cancer. Way to go Pam !!
I wonder if the interaction between the various drugs you have been taking is causing some of the other problems.
Sometimes when more than one drug is using the same pathway in the body there are unpleasant interactions
even though those drugs work together to reduce the cancer. It could be an interaction between a cancer drug and a drug the person is taking for something else. It is even possible for a drug to interact with some kinds of foods.
Some drug companies have pharmacists who are willing to talk to patients about these issues. I found 1-800 numbers on drug websites or drug company websites and called pharmacists a couple times about these issues. The pharmacists were very nice and I learned alot. I brought the information to my doc and we were able to make some adjustments to sort out the problems.
If your oncologist can't help you with the skin issues and if your Chinese doctor can't help you maybe a dermatologist who understands something about oncology can suggest something to help.
Good luck. Keep putting one foot in front of the other. You are doing a great job !!! Congratulations !!

Rich66 · 08-31-2010, 11:20 PM

What the heck is an ER+ gal like yourself doing drinking coffee? Doesn't matter if it's decaf.

Regarding the side effects, might be some relevant info here on skin issues:
http://her2support.org/vbulletin/sho...614#post223614

Lori R · 09-01-2010, 04:18 AM

Pam,
Glad to hear the good news on the recent scan!!!

I think that it is reasonable to assume that since your latest chemo cocktail is quite the complicated mix that it is just too potent. Would you envision starting with Herceptin+Tykerb and theoretically continue to build more strength then add back one of the current drugs? Not certain which would be first Xeloda or the Aromasin. Seems like a reasonable approach.

If your Dr. pushes the Abraxane, I found it MUCH more tolerable (really....MUCH) than the taxotere. It is supposedly more targeted to tumor cells and I had minimal side effects.

Here's to a new cocktail with an umbrella on the side!!

Lori

If you would go back on the hercept

mmoons · 09-01-2010, 04:40 AM

Oh Pam...I have been watching for good news from you and am so happy about your scan results!! I do not have any advice but couldn't resist writing to shout my "YAHOOO". I am sad about the wretched side affects and praying they go away soon. I want you to enjoy a great big burger or taco or coffee ... or whatever makes you happy. You are such a warrior and so amazing!

Love,
Maureen

Sheila · 09-01-2010, 05:05 AM

Pam
So happy to read the results of your scans....just wondering have they given you like a Medrol dose pack for the swelling? Its like a step down steroid program....seems that would be something to jump start getting it under control before adding another chemo. You might want to ask about the Tykerb herceptin combo again, without Xeloda....start slow and increase on the Tykerb.
Keeping you in my thoughts for good results whichever way the Dr. decides to go!

PinkGirl · 09-01-2010, 05:48 AM

Great news PamGirl!!!

Just wondering about some meds for the swelling and half shut eye ...
There must be something to take for this ... like some super duper
benydryl type of thing.

ammebarb · 09-01-2010, 07:10 AM

Pam, I'm so glad you got good scan results! I don't have any advice--not knowlegable enough for that, but wanted you to know that I'm hoping you will soon be rid of some side effects and have a plan for how to proceed.

Barb A.

Emelie B · 09-01-2010, 08:27 AM

Pam,
Well, you have good news and not-so-good news. Congratulations on the great news that you are stable. Yeah!!
I completely agree with the other ladies that suggested something to get the swelling down. It has been awhile since you stopped your treatments, so I would think it should be subsiding.
You are in my thoughts constantly and I hope you and your dr agree on you treatment plan.
Best of luck and be kind to yourself.
Emelie

Ceesun · 09-02-2010, 07:09 AM

Hey Pam, This is good news...keep us informed. Ceesun

jml · 09-02-2010, 01:49 PM

Yay! "mild improvement" is MAJOR good news!
So happy and relieved for you.
But I wish you didn't have to deal with such complex side effects.
I sure hope someone will step in with a plan to help you
resolve all these issues.
In the meantime, rest easy~

Hugs~
Jessica

Nancy L · 09-02-2010, 02:41 PM

After I had a serious allergic reaction to 1000mg of Tykerb after only five days of treatment, Dr. Slamon dropped me to 750mg which I have now been on for 19 months. I also get Herceptin every three weeks. All of our bodies are different----one size fits all does not apply to drugs. My husband is so drug sensitive that he always starts on a very low dose and adds as needed to get the result the doctor is looking for. Cancer drugs are different but I still say "one size does not fit all"---it is just easier for the docs and the drug companies. In the ideal world, they would be working with each of us to find the exact optimum dosage level. I take my Tykerb at bedtime---that way I know it won't interfere with food. But I do think it makes me restless and sometimes I have to take 5mg of Valium to get to sleep.

Pam P · 09-02-2010, 06:18 PM

Nancy - what kind of negative reactions did you have from the tykerb?

I saw the onc. today. He thought I looked worse than when I saw him 2 wks ago. At that time I had no swelling in my arms - all that was evident then was my face. He doesn't think there's a blood clot, but wants me to have a chest CT to rule it out. Otherwise I'm continuing to hold all meds for 2 more weeks then see him again.

In the meantime, I'm trying to be patient but it's not easy!

ElaineM · 09-03-2010, 10:13 AM

I hope the cat scan is negative for a blood clot or any other problem. Take good care of yourself. I know you are doing your very best, but I always wish people that.
Smile.

Chelee · 09-03-2010, 05:43 PM

Pam,
You have certainly dealt with more then your fair share of side affects..my heart goes out to you. I'm so sorry to hear your now dealing with swelling in your arms. Like you didn't have enough to deal with. I sure hope this CT rules out a blood clot...yet gives them a clue as to what might be going on? I can only imagine the anxiety this is causing you.

You had mentioned having acupuncture. I remember reading that it hurt and it's really not suppose to from what I've been told. (But I'm no expert in that area.) But do you think the person doing your acupuncture could be possible putting the needles in too deep therefore causing swelling? (Just a thought?) I don't remember if you said you were having the needles placed in your arms? Maybe you should temporarly stop that until they figure out what's going on? Please keep us updated...I'll be keeping good thoughts for you.

Chelee