Progression but AI's seem to be working

kellypa

Progression but AI's seem to be working

kellypa

It was confirmed on Wednesday that I have progression.  I was diagnosed in December of 2005 ER/PR+, no nodes, HER -, but bone mets to spine, ribs, sacrum, pelvic.  Only treatment so far has been arimidex and scans every 3 months with "stable" results.   I have changed oncologists when I heard I had progression, so I do not have any idea what kind of treatment I will be getting.  I am very upset because I feel now that I should have been treated more aggressively since the very beginning.  But, I can't go back-only move on.  Would like to hear from those who have bone mets only and their treatments.  Thank you so much for all of your support.  I couldn't do it without all of you.

Love you all,

kellypa  (Patti Kelly - Quincy, IL)

LuAnnH

Kelly,

I have bone mets only sinc July 06.  I felt like I should be doing more than just hormonals when I was first dx.  I soon learned that the focus is on quality of life as opposed to quantity of life.  The onc like to take the least toxic tx necessary to keep your cancer stable or reducing.  Zometa and AI's are the first line tx in bone mets for ER/PR+ people, so I don't think your onc was off giving you those.  You still have more hormonals to try before you need to do chemo.  My mets are in the sternum & ribs.  I switched from Arimidex to Aromasin because the side effects from the Arimidex was destroying my QOL.  I had a progression on Aromasin in May and now am on Faslodex.  My cancer is shrinking and doing well with the faslodex.  I hope to get many more years on this drug before I have to move onto the chemo route.

I hope you like your new onc and continue to get long times in between tx choices.

kellypa

Thanks so much for your response.  I do understand that there are certain guidelines that all oncologist must follow as far as first line, second line and third line treatments.  Yes,we want the first line to work, but how many cases has that happened.  If you speak with women from 20 years ago that had Stage IV er+/pr+ cancer, there was not a lot of options other than chemo, so that is what they received.  Most all of them today are doing well and have not progression and are cancer free.  I think I would rather take the chemo and have the Quantity of Life other than waiting around to see if the other "lines" work.  What do you think?

badboob67

Kelly,

I was 38 in Feb 2006 when I found out I have bc and bone mets, right from the get-go. I was also a bit worried about not doing chemo. My mets were on nearly every one of my vertebrae, my skull, ribs, pelvis, sacrum, and femur. I have done ARIMIDEX, ZOLADEX, and ZOMETA, plus two rounds of rads. One round was following a spinal fracture and one this past spring for 3 spots on my pelvis that were being "stubborn" and not responding as well to treatment. I was brought to stable within 6 months of beginning the hormonal tx and still am. I have more scans this month, but expect everything to still look good! I had a hard time finding the right pain meds, but finally have found great relief with TRAMADOL.

I understand your feelings about the chemo. Initially, I wanted to blast all these wicked cells with chemo, too. I found, though, that stopping the cancer from spreading with the least toxic treatment for me (hormonal) has worked well. I also do not want to burn up too many options early on.

I am interested to hear about Stage IV women from 20 years ago being cancer free. Are you sure about that? There have been plenty of stage IV women here on the boards that did several chemos and, sadly, are no longer with us. There really are no hard and fast rules as to treatments. A treatment that works for you may not work for someone with the same pathology. My onc told me that medical oncology truly is more of an art than a science. There just aren't any guarantees.

If you feel that strongly about doing chemo, perhaps you could convince your onc to give it to you or go to an onc who will. Whatever you choose, my prayers are with you.

(((HUGS)))

Diane