numbers

[Joy]

Hi everyone, I hate to bring this up again, but there is no better place to discuss these things. So, I'm on Navlebine/Herceptin and as you may remember I had great response in the very beginning (September). Now, I'm not so sure if that is still true. I have scans on the 22nd, but I can't help myself in obessessing about some numbers. My December CA 27.29 was 143-the lowest since the Fall. My January result is 163. Also my ALT/AST are holding steady at a little above normal prior to Navelbine they were fairly elevated. I've been watching my bilirubin and alkaline phosphase on my chem panels and the bilirubin seems fine (always something to be grateful for). My alk phos has been steadily rising within the normal range. In the last few month it has gone 103, 115, 103, 113, 125 and now 150 (which per my lab is the highest normal value).

To add to my worry, or maybe because of it, I am having a lot of digestive problems. I have had them moderately for the last year during good tests and bad. They just seem to get worse. I kind of feel like I have IBS. I realized today at treatment that kytril and navelbine are both constipating and that has been an issue and it seems logical that that is some of the problem.

My worries are:
- The navelbine is no longer working I'm sure herceptin doesn't do much for me after 41/2 years.
-Are the alk phos results indicative of liver function problems, especially when backed up (pardon the pun) to the digestive problems.
-I have lots of little transient pains all over my abdomen (I know I am over focused on it too).
-Is Navlebine cumulatively harder on the liver?
-If this treatment is failing will the next one fail as fast?
-Am I becoming too heavily pre-treated now that this is my 3rd line of tx for MBC?
-Is Tykerb really going to be available next month? Or, should I go through the hassle of getting on the EAP?

Anybody's thoughts or ideas or experiences would be so very appreciated!!!

Thanks for being there.

[Becky]

Dear Joy


If I were you, I would go through the hassel of getting Tykerb because with the FDA, things don't always go the way you want them to go.

At SABCS this year, there were 2 presentations that were noteworthy that I wrote up and posted.

The first is that Avastin has been shown to work well in women that have been heavily pretreated (some trial participants had had 4th line chemotherapy). Secondly, another trial showed that low dose weekly administered Abraxane gives great results too. Maybe trying them together would be a great shot. Especially since you have liver mets and the liver has such an abundant blood supply hence stopping the growth of the blood supply to tumors formed there seems like a good idea.

Keep on kicking. Navelbine is a great drug but it works best in the lung (as far as I can personally see - this may not be true).

Hang in there. I know its really hard and feel embarassed as I am not Stage 4 and have no idea what many of your (and others) feelings are. I am thinking of you. Take deep breaths and smile as I do know that helps.

Big hugs from me.

[Shell]

Joy-

I'm on navelbine/herceptin, but also with avastin, and you might want to explore that.

i was on xeloda, with tykerb at the end, but then i had slight progression, so we stopped in august. it was november by the time scans were done and options were reviewed, and i started on doxil/avastin (i have failed on herceptin, so that wasn't the strongest option for me). i have mets in the lungs and chest, and was having great difficulty breathing, and a constant non-persistant cough. those 5 weeks on that treatment were horrible, such that i declined the 4th treatment and asked to move the ct scan up for then instead. it confirmed my symptoms, and there had been significant progression. that was such a depressing time for me because i had never failed a treatment so quickly, and i too thought my options were too few to be comfortable.

in mid-december we started on navelbine/herceptin/avastin, and things improved a little bit. the cough is a bit better, and i have still have a ton of side effects, but it is easier to breathe (but still very tiring to climb steps). i'm hoping the progress continues.

i will resume tykerb as soon as it becomes available, and i think you should explore that option as well. for the constipation, my doctor prescribed GlycoLax, and i strongly recommend that.

try to stay positive, and i'll keep you in my thoughts for the 22nd. whenever i see your name, it just brings a smile, as i just can't help but think of something that brings joy to me...

kind regards,

[Carolyns]

Dear Joy,

I wonder how you are doing today.

Here are my thoughts and ideas. For me, I always feel I am losing my mind and get very sad / scared as scan time approaches. When I go to my physcologist he askes me if there something I am not doing that I think I should be doing in the mean time. Sometimes my answer will be yes and then he suggest that I do it. Always easier said than done but sometimes it helps me to regain my confidence to just do what I am putting off. Other times my answer is no and that I have done all that I can do and I am just plain scared. Scan time always brings this on for me. It seems helpful that you listed your concerns and posted.

I have noticed that all of the women here are extremely proactive in there own care and perhaps that is one reason why they gather together on this board. Birds of a feather you know. No heads in the sand here. Unfortunately along with knowledge can come fear. I get very affraid as a stage 4 girl and watch the numbers although not as closely as you. I sometimes wish that I could let someone else sit in the drivers seat of this scary ride and just sit back and beleive that everything would be okay. I get very tired.

Regarding your Herceptin comment - Is it true that you are sure it doesn't do much for you after 4 1/2 years? Does your doctor agree? I agree with Becky that you should persue the Lapatanib option now.

I wonder how you are doing today and I wish you well and hope for good news at scan time.

Love and Peace, Carolyns

[Joy]

Thank you very much for your responses and suggestions. Also you bring encouragement as I have a 'gut' feeling that Avastin is necessary. I've had it for a while and if things are going south, I will get pushier about that. I am also going to resurrect the process of the Tykerb EAP so at least the process is on.

I was just sharing with my sister yesterday that I wish I could be someone who just didn't need to have all of the information (numbers). I have always been like that my whole life-wanting to know everything and worrying about EVERYTHING. It gets exhausting to be in my head. Anyone have experience with lobotomies:).

Any other thoughts and suggestions or happy words are so appreciated, but your ideas help A LOT!!!

Much love to all of you.

[Joy]

I appreciate you sharing your struggles with treatments-I really wish you didn't have them. I'm soo hoping and praying that you are onto the right combination and can feel really, really great soon. You are inspiring to me. Thank you.

[Carolyns]

Hi Joy,

It's me again. Regarding sharing some ideas...I was trying to think and went out to my 8 year old son's stuff. I picked up his paint brush and started painting on a white sheet of paper ( I am no artist). Then I remembered that my physcologist once asked me to meditate and then to paint what I felt. In the meditation I visualized a light passing through all areas of my body and checking them out. The light was a healing light and it took note of feelings and sensations as it passed. Once I finished my meditation I painted a picture of my body and use colors to illustrate pain and comfort in the areas where I felt them. It helped me.

I also remember someone once telling me that a person's gut feeling was usually right. In my case I was feeling really great. Well it turned out that I wasn't so great after all. My gut was wrong. So I have found that I need to listen to my gut but consider that it can be wrong, sometimes. You know prepare for the worst and hope for the best.

A book that I have read and found extremely helpful is called The Artist's Way by Julia Cameron.

PS - My mind never stops either and I seemed to have passed this trait on to my son.

Best wishes, Carolyn

[Adriana Mangus]

What matters is how you feel. My onc does not rely solely on numbers, he's a firm believer that even though a ct scan might show that a tumor is growing back, it's more important your energy level, appetite, and other symptoms. My number Ca2729 went up (and had been going up for the last year) as well and just began taking xeloda yesterday. Do not panic, there are many other drugs your onc can put you on...keep the fight!! Take care,

[MGordon]

Joy -

I'd definitely investigate getting on Tykerb, and our Oncologist is the trial coordinator for the entire state of Colorado - and I know I can get you in to see him or schedule a phone call. Call me! (303.604.6922)

Lisa was only able to participate in the trial for one week, but the bright light in that week was the fact that while on Tykerb Lisa's markers actually went down. Since her recurrance in 2003 her markers had ALWAYS gone up each week. Her markers dropped form 396 to 316 with only one weeks treatment.

[Joy]

So good to see you on here, how are you, what are you up to? I think I will look into the EAP. I have scans on the 22nd and have no idea what they will reveal, should I start the process before that or wait and see if I'm still okay?

Been thinking about you and hoping that Lisa's celebration was very warm and wonderful like she is!!!