question for Eleanor

[Jackie]

Hi Eleanor,
I was reading some posts and saw one of yours that stated your history, which is almost identical to mine. Do you mind telling me what chemo drugs you took during your 18 mo journey to NED? I began herceptin/navelbine 07/03 which is bringing my Ca 27/29 counts down, but my onc sd she didn't think that they'd go down as low as normal range. I'd love to prove her wrong! What were the setbacks you referred to, if you don't mind my asking? This is what's so wonderful about this site! Thank you so much for any info you care to share!
Jackie

[eleanor]

Hi Jackie.
I was originally dx infiltrating lobular carcinoma, 5 out of 10 positive nodes, er/per neg and her2 3+ positive in Feb/00. Did the usual rounds of chemo/rads and then in Jan of 02 I started having hip pain that was pretty severe. I kind of ignored it but it became too painful. In March of 02, bone mets confirmed to hips, spine, skull and ribs. Started taxotere, carboplatin and herceptin. My original tumor markers were 63 and 22 (normal 35 and below 2.5). Within 2 mos I was in the normal range, by the end of the summer a bone scan showed I had stablized, by April of 03 the bone scan was normal and a PET scan and subsequent MRIs showed no tumor activity in bones. CTs to abdomen and lungs showed no progression. I was one of the lucky ones in terms of response to drugs. That's the good news. The bad news is I became highly allergic to the carboplatin and had to come off it in Sept of 02, so I was only on taxotere and herceptin. Then
I developed shortness of breath which turned out to be bilateral pleural effusions. Had to have the fluid drained several times and ended up having to have a pleuradesis done on both lungs. I was in the hospital for 3 weeks. Had to be taken off taxotere and herceptin for a few months due to extensive lung damage. It turns out I had radiation recall and lots of scar tissue. I was then put on Gemzar and herceptin, but my tumor markers started to rise so I was put on Navelbine and herceptin and saw immediate drop in markers. But again, I had a reaction and ended up in the hospital for 9 days. This was in July/03. Was given massive doses of steroids and sent home. Went back to Navelbine and herceptin and again ended up in the hospital, this time in intensive care for a week and then in a progressive care unit for another week. Sent home and spent 2 weeks in bed due to severe weakness. I had to get a walker and a wheel chair and a bedside commode. I couldn't walk and could barely feed myself. I was on morphine for the pain. I was literally slowly suffocating due to drug reactions and trying to come off steroids. I was told that I had possible lymphagenic spread, lungs mets, lymphoma, radiation recall, pleural effusions and fibrosis. My lungs were operating at less than 50% and there was fluid around my heart. I had 6 different dr's giving me six different opinions. Nothing could be ruled out and everything was considered cancer unless proven otherwise. It was determined that I could no longer be treated with chemo and basically had to choose my poison. Suffocation or cancer. What a horrible time in my life. I seriously contemplated suicide. I did not want a long drawn out, painful death.
After several scans and consultations and just damn determination on my part (once I got out of my depression) I am happy to report that at this writing I am NED. (always subject to change). The lung damage is extensive, I am operating at 37% capacity. It is due to chemo and radiation (a rare side effect) and the damage is not reversible. But there is no sign of cancer in my lungs. I went from being 46 yrs old to 86 yrs old in a matter of months. I can't walk very fast, can't lift anything, can't climb stairs, etc. I am unable to go back to work and will be seeing my dr today because it looks like I will be taken off herceptin because of heart damage. (talk about being nervous). I am very limited in what I can do and where I can go (due to having to carry oxygen with me at all times). BUT I AM ALIVE and I remind myself almost hourly that I AM ONE OF THE LUCKY ONES!!!!!
My side effects were rare and fortunately most women will not experience the serverity of reactions that I did. My onc may have over did it in an effort to eradicate the disease and to keep me here for years to come so that I may continue to be with my children. And if this is the price I pay, then it is worth it. I get frustrated at times and I cry like everyone else(I'm on Xanax, it helps). I'm scared and feel alone and wish this wasn't happening. But then I remind myself that there are lots of women who would gladly trade places with me and that gives me strength to get through the next month.
I am still on massive doses of steroids (can't breath with out them) but I am being weaned off the prednisone at roughly 1mg a week. At this rate I will be on them another 4-5 months which will total about 16 months of being on the drug. I have gained 40 lbs and have to be on lasix due to the massive amounts of fluid I retain. I am in pain and have trouble sleeping. (boy this just keeps getting happier and happier). But in spite of this, I feel good, I feel positive, and I'm looking forward to spending another year with my family and friends.
el

[lolam]

When I got to the end of your post I realized I had been holding my breath!! It amazes me the perseverance of the human spirit. I can only believe that God must have given you the strength to survive. He is not done with your life yet and your family obviously still needs you. At least your situation can help us all to say, :But remember all that El went through and still survived?" We would not wish this on you just so we could find courage but nevertheless you do give us courage..........I only pray and hope that now you will find some repreve and thrive and survive........Hugs, Lola

[Sandy]

Oh my Gosh, what a story except that it is true. Again I think of a sermon at our church, "why do the righteous have to suffer?" You deserve to rest, relax, and do nothing but enjoy what ever it is that you can. We are all praying for you. Sure it too bad that they didn't have as many drugs to bring your body back as they had to tear it down. May God bless you and your family with something better then you've seen so far. Too bad we couldn't experience a little heaven here with our families after going through so much. Sending you huge hugs, Sandy

[Jackie]

Thank you so much for "reliving" that trauma, Eleanor!! You have certainly been faced with enough challenges for multiple lifetimes, so I'm hoping it will be clear sailing for you now. If I'm confronted with what you've been, I hope I have 1/2 your courage! I will be sending lots of positive thoughts your way.
Best of luck!