Hi Jojo,
Since April/May I could not post any message here or replied to any of the posts, due to illness but used to refer quite often.
To be honest, this site has really helped me to control my metastatic disease for the moment with information which enabled me to discuss with onclogist. I am from Asia and we have very limted saurces of information and the onclogists are fully overloaded. Thanks to Christine, for inventing this incredible site as well as for maintining it.
Here my story goes about ER/PR.
1994 Sep - Mastectomy + CMF chemo for 6 cycles and start of Tamoxifen as the excision biopsy shown strongly ER/PR+ but more on PR, I was 38 yrs old then.
1997 Dec - Stop taking Tamoxifen to see whether it was causing for rising liver enzyme levels (big mistake).
1998 June - local recurrence on the scar, lumptectomy+26 radiation+CMA chemo 6 cycles and re-start of tamoxifen.
2002 March - developed a severe cough + chest xray shown some changes in the lungs but it was thought due to post radiation.
2003 June - No change in cough and became horsiness, CT to whole abdorment has shown some nodules in the lungs+ a small 7mm lession in the liver (This is the time I found this site).
2003 Dec - loss of appetite & Cough continues.
CT has shown another small 6 mm lession in the liver.
Started Xeloda for 6 cycles and said good bye to Tamoxifen which was really kept my disease controlled for 9 yrs.
2004 March - Start of Femara.
2004 April - completed 6 cycles of Xeloda.
CT scan has not shown any changes, except that i got effusions in the lungs and around the heart.
In the mean time we found that my original tumor which was tested for Her2 status from the storage, was HER2 neu +++.
2004 May - Got a terrible flu and ended up in the incentive care unit and got lung fluid drained out. Also started my 1st ever herceptin dose. My weight went down by almost 8kg from the bout and the onclogist wanted to wait for sometime to gain the strength for another chemo.
My cough reduced after the fluid drained out.
CT scans not shown any changes and the brain scan also cme out clean.
2004 Aug - Ct scans given contradictory results.
No nudules in the lungs but fluid build up. Liver tumor size came as 1 cm with few very small tumors but nothing about 2nd tumor.
2004 Sep - start of Carboplatin and got severe side effect. I had my weekly Herceptin dose on Monday and I am still taking Femera since March.
i am doing fine at the moment with Herceptin & Femera, but Carbo platine is disturbing a bit.
Its great if Christine can tell how long she took carbo platin and how she did with that.
I became diabate or diagnosed to have diabates along with my 1st chemo in 1994.
I am dexocardia with situs inverse, very strange thing, means, heart is in the right and other organs are on opposite side, my mastectomy also on right side. Is there anyone with this sort?
Regards.
Chandi
My email:
chandi21@hotmail.com
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