Looking back, feeling vulnerable

Hi Everyone,

I'm just having one of "those" days that I'm sure most of you have experienced. If you have read my recent posts, I've been having some shortness of breath/cough and it appears it may just be side effects of taxotere and steroids. Chest x-ray did not show any new spots, just a small amount of fluid. Echo great-heart fine. RIght now I just feel like I might not be in the boat that I'm in if circumstances last year at this time were different. I was told of "subtle" changes on my bone scan--unsure if it was mets. Since I did not receive the herceptin arm originally of course this meant I could receive it now. Well, of course I said yes but I also mentioned to my onc about combining it with chemo since it tends to work better. She told me she did not think it was necessary at that time because there was no organ involvement (I had a ct scan and my liver and lungs were clear). She even discussed it with other doctors at a tumor meeting. ALso keep in mind that I go to a major cancer center. SO, I just went on the herceptin alone. Well, low and behold, in May I started coughing and in JUne was diagnosed with lung mets. It was probably there all the time but too small to show up on the scan in January.

I feel like I'm always a day late and a dollar short. First I did not receive the herceptin arm in the trial, then this happens. I've always been very proactive in my treatment, I do alot nutritionally, etc. yet these bad things still seem to happen. Now I keep wondering if I would have been put on perhaps navelbine with the herceptin maybe the lung mets would have never grown, perhaps it would have been knocked out when it was there but too small to show on the cat scan and I would not be in this predicament that I'm in.

I know I can't change the past but this IS MY LIFE and we only have one chance at life, right? Did my onc. make a major mistake?

Please help!!

Blessings and Hugs,

Linda in MI.

P.S. I'm not giving up but I just need a boost right now!!

Hi Linda, I can understand the anger and frustration coming thru in your question! I'm so sorry that you've had mets to your lungs. Having not known anyone with a recurrence there, I can only conclude that it would be scarey....

I don't know what the accepted treatment protocols are for mere anomalies detected in the cells....I'm reminded of the Johns Hopkins doctor I consulted last summer who said that there was no point in treating me in the absence of measurable disease. It felt like I might be playing with fire to just sit and wait for a recurrence! (Unfortunately I didn't "have" to wait long.)
I guess you'll have to find a way to comfort yourself by remembering that you and your doctors did what made the best sense at the time, given what you all knew of your condition. It's reassuring to hear that she consulted other doctors in the process....
I wish you comfort and peace, Linda.

Hi Linda,
I, too, am sorry to hear of your mets to the lung. It took me a long time to adjust to having a recurrence (mine was to bones), and I can well understand your frustration in wondering if yours could have been prevented! A year before my recurrence, my onc for some reason (and without consulting me) administered a Ca 27/29 test that showed elevated protein levels long before there was measureable disease. All subsequent tests were negative but she remained suspicious. During that time she didn't recommend any treatment (stupid me, I wasn't aware of herceptin trials). She maintained that treatment wd not begin until disease progression was confirmed. I remember her remarks that treatments were not good enough to prevent recurrence. You can drive yourself crazy second guessing....you have a lot of ammo to throw at this thing! That's the attitude I have adopted from this website, for which I am truly thankful. There are many success stories out there that give us all the hope we need and deserve. Best of luck to you in winning the challenge in front of you!

I feel the same way! Had chemo/mast/rads, which ended August 29. Asked about Herceptin then since I was her2+++. "No data to support it" when not dx with mets. Also felt like I wanted more chemo (and why would I WANT that), but onc said no since no sign of anything. Clear bone scan in Oct.; clear PET in July.

Actually good, I guess, to hear that docs at the cancer centers seem to say what my onc (in NJ) says.

Well, now I do start Herceptin/Navelbine/Zometa next week for my bone and liver mets.

Good luck to us all...

Sue

Hi Linda,
I know exactly how you feel. First, let me say that the trend seems to be to hold off treatment as long as possible now. The reason is that in some cases treatment is as bad as the disease and the dr's are finding that in some cases if they start treatment too soon, it loses it's effectiveness and if you're one of the unfortunate ones who experiences severe side effects and has to be taken off the drug, then you're now in a worse position. (am I making sense?)Like you, however, this makes me extremely nervouse because I also feel that the earlier it's caught (or if chemo is used as a preventative) that it would stand to reason that we are better off and there is less disease to battle. I am trying to not the play the "what if" game right now. I was in a situation where my onc at the time was basically damn the torpedoes, full speed ahead. Now, possibly as a result of this, I will probably have to be pulled permanently off herceptin and almost all chemos due to extensive lung damage and now it looks like I have permanent heart damage. Granted when I started this in April, 02, alot of info wasn't available, so I don't blame the dr. But I am permanently disabled and oxygen dependent. The good news????? I'm NED. So.............even though I did not have regular scans and I should have been taken off ALL drugs more than a year ago, who's to say that in spite of the damage, perhaps this man saved my life. Then again what if I had a different dr who played it more cautiously, who may have stopped the drugs and then the disease progressed. Or perhaps with a dr who was more conservative, they would have been better at regulating the drugs and I would not be in this position. We have no way of knowing what the outcome is going to be and I think we can drive ourselves crazy trying to second guess our medical teams. I had to change oncs due to the complications I have had because of treatment. I was under the care of 2 oncs, a cardiologist and a pulmonologist. Back in Sept. I was getting so many different diagnosis/prognosis that my husband and I were under the impression I wouldn't make it to the summer. It was then we decided we needed to be under one roof and switched to a cancer center so that we would have the benefits of dr's who were more specialized and worked together.
Like you and all the other women who post here, I am truly scared. I feel so fortunate right now, but I know I am walking a tightrope without a net and I know I shouldn't look down, but I do. I just keep praying that I am making the right decisions and that my dr's know what they are talking about. To put your life in the hands of another is such a terrible position to be in, but what choice do we have? Sorry to ramble on, but be your own advocate and get lots of opinions and discuss your fears and concerns with your dr. They are trained to deal with all aspects of this disease.
AND WE ARE ALL HERE FOR YOU
Geez, I hope I was of some help here.
el

Dear Linda

I feel just the opposite and try to do all I can to boost my natural immune system. I took the Herceptin alone Dec 23rd (mets all over the liver) and hope I didn't wait too long. So far things look real good - but I do a lot of natural (I have continuted the full Gerson Therapy, which is difficult) - am feeling weak, but real good. God Bless, Luv, PJ