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Old 06-08-2005, 11:10 AM   #1
Kim in CA
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Hello Everyone,

Just wanted to give you an update on the results of my last bloodwork.

To summarize things briefly: I showed a robust response 2 months into the trial. At 7 months into the trial my immunce response was no longer considered positive because my stimulation index (SI) had dropped below 2. At 9 months, I am now showing a slightly positive immune response again.

I will be having another blood draw in a couple of weeks and then they won't be doing another one until December. I will post those results for you all when they become available.

I am still doing well, with no evidence of disease. I will probably continue my Herceptin indefinitely, or as long as my MUGAs continue to be favorable. I am due in August for my annual brain MRI, but we have decided not to do anymore PET or CT scans as long as my markers stay in the normal range and I don't have any symptoms. We feel like I've had enough exposure to radiation for now.

It's hard for me to believe that it's been 4 years now since I had my recurrence to my liver, and almost 2 years of being NED!

Miracles do happen! Love, Kim in CA


P. S. Thought I would send a recent photo of me doing my favorite thing in the whole world (besides being a Grandma of course!)
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Old 08-15-2005, 10:12 PM   #2
*_kath_*
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Kim,
I saw that you are 4 yrs out with liver mets and wanted to know what you did before the vaccine trial. I was diagnosed with same in 8/04 and did a trial with Gemzar/Carboplatin and Herceptin which worked for a while. Am now looking for new chemo to try with H. Any advice?
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Old 08-17-2005, 08:22 PM   #3
*_Kim in CA_*
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Hi Kath,

My treatment for the liver mets was 8 months of Taxotere and Herceptin. After 8 months I was having so many side effects that I decided to stop the Taxotere for awhile and just continue with the Herceptin. While on the Herceptin my tumor markers continued to fall and eventually reached the normal range. Follow up scans still showed a small spot on my liver, so in November of 2002 I elected to have the left side of my liver resected. It turns out that there was no cancer left in my liver, just lots of scar tissue. I also started taking Femara at the time I quit the Taxotere.

I don't know if you saw my post on the main board, but my July 12th brain MRI revealed a small tumor that I just had treated with Gamma Knife last Friday. I have been getting regular MRIs of my brain and thank goodness we found it while it was quite small and easily treatable. I never had any symptoms, so it's a good thing to do the MRIs for sure!

The Taxotere is a very tolerable drug, in fact my side affects weren't too bad until the last couple of months. It's just that I had so many mets to my liver I needed to stay on it for a long time.

Back in 2001, when I was first diagnosed with the recurrence to my liver, I was a very uninformed patient.

In June, routine blood work showed elevated tumor markers. The doctor said to wait a month then repeat the blood test. So in July I did another test and when I didn't hear anything from the Doc I figured, no news is good news. It was nearly 2 weeks before a good friend told me to call and find out for sure what the results were. Anyway, when I finally got ahold of the doctor he said that we needed to schedule scans. After a CT scan, the doctor said I had a tumor about the size of a walnut, but that he thought it might be scar tissue from an infection I had back in 97 when I had my stem cell transplant. It was too close to the main blood vessel to biopsy so he sent me for an ultrsound. They still weren't sure so next they scheduled a PET scan. Long story short, by the time we got results from the PET it showed mets throughout my liver and my tumor markers were off the charts! By the time I finally got the conclusive diagnosis it was the end of September, and thats when I started my treatment. I still get mad when I think about how how much time passed before I started my treatment and how oblivious I was.

If I had known what I know now, I would have demanded tests right away and could have attacked the mets when they were still small. I probably wouldn't have had to be on the Taxotere for nearly as long and probably wouldn't have felt like I needed the liver surgery.

Anyway, I think the Taxotere is very effective and tolerable if you don't have to be on it forever. I also had it every week, given in smaller doses which is supposed to make for fewer side effects, rather than once every 3 weeks.

Hope this is of help to you and I'm happy to share any other info you might need.

Kim
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Old 08-20-2005, 08:14 PM   #4
Gina
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Hi, Kim and Kath,

Wow Kim, your story is very similar to mine. Kath, just so you know, I am 8 years out with liver mets...that should encourage you a wee bit...smile. Kim, THANK you for stressing the importance of the tumor markers... I can not believe the LAG time in your case...it is reallly mal practice, but it goes on day after day. I hope newly diagnosed Helen will read your story as she has been denied any tumor marker blood tests from TWO supposed specialists in the San Fran area???? Where have these ONCS been...head in the sand trap on some golf course somewhere I guess...those who read me know I certainly have no love of them but view them as a necessary evil means to a heavenly end...Herceptin.

Kath, Herceptin alone (plus diet and a never give in attitude) got rid of more than 12 liver lesions that I had the sizes of nickles, quarters, dimes and 50 cent pieces...the whole horrid story is posted here somewhere.. I was interested in the part of Kim's story about going Herceptin alone as I did as well. It really does work, but you must inform yourself and read this site and LEARN everything you possibly can.

Best to you both,
Gina
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