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The importance of updates (to me at least)

Double Whammy's picture
Double Whammy
Posts: 2802
Joined: Jun 2010

I so appreciate the all the recent updates from many. I worry when I don't see any posts for a while - especially when I know you're struggling. Also from those who drop off for a while for whatever reason, it's just good to hear how you're doing. I try to stay connected because I not only care about what's going on with you, but to be able to provide hope to new members facing the start of their journeys because I did it, it ain't easy, and I'm well again 2+ years later.

So, my selfish plea to everyone is to just please drop a line now and then to update us - and if you're not able to because you're not feeling well enough, please ask someone else to post for you.


New Flower
Posts: 4299
Joined: Aug 2009

You are correct, we need to update each other. CSN site is often difficult to get in or post a comment. It has been hard for me to describe fatigue and side effects from Chemo because it makes me feel even worse. I am also not sure if everybody wants to read about it. I am promising to be better in the future and post once a month update.
Here it goes, my current situation:
I have been in Chemo treatment for almost 6 months by now. Last week was too hard for me, including Chemo treatment, working, repairing my car, which I slightly damaged while leaving my oncologist office in November as I was disappointed due elevated Biomarkers' results, LA crazy traffic and ect. I felt like Zombi and was very fatigued and tired
I have good news to share - we repeated my blood work in December and markers came back normal. While my oncologist is very happy, she wants to continue with Chemo at least for another 1-2 months to get a steady state response from Bio markers. She was in San Antonio last week maybe she will include new ideas as we are going to discuss my future treatment plan at my next visit. I am still debating with myself weather or not to have an another PET/CT before the end of this year.

Happy Holidays to you and your family.

SIROD's picture
Posts: 2199
Joined: Jun 2010

I second Suzanne's request. From those who are now out of treatment, it's good to hear that your doing well, those who are in treatment, it's good to have support from those who are with you in the journey and those who continue the journey and those who are in remission from this journey. Keep in touch.

New Flower, I usually have all test that need to be done in December, this way the insurance usually covers it 100%. Most insurance in January, you start fresh with the co-pays again. I don't want another blood test but because my primary care was so concern with my anemia, I will do it before the year ends. Ct scan's for me after two stable one, I told my oncologist, I don't want any until there are symptoms that warrant it. I don't need anymore to continue to check for the sake of checking. However, I am not a newbie at this as I have done it all since 1994. I know the signs when it returns. This way I can feel good pretending that I am totally normal. I deal with side effects by ignoring them. Faslodex this time around for me, does have a lot more than it did the first time at a lower dose that didn't work.

Fatigue is something to be concerned when driving. There are times, I knew that being behind the wheel was very foolhardy. Perhaps a good friend could drive you on those days. Don't risk injury to you, someone else or even the car. Wishing you very best and I do hope your blood test will show good results.


Posts: 6587
Joined: Oct 2010

I TOO love reading updates...!

I am still doing the Happy Dance since I got ALL good post surgery for suspicious SPOT-which ended up to be scar tissue...but worth my peace of mind to KNOW for sure NOT cancer again.


Pinky68's picture
Posts: 206
Joined: Jul 2012

everyone's updates also!! I got a very bad cold about 3-4 weeks ago (about the worst I've ever had) I had 2 rounds of antibiotics and one week of prednisone but feeling much better now! Still have the lingering cough though. I received my box for the ornament exchange, and I'm gonna open it when I'm done typing!!!!Can't wait!! I'm shipping my ornament box out today to a special pink warrior!!
Thanks Suzanne for this post!

Eleanor1's picture
Posts: 68
Joined: Sep 2012

I like reading updates and I agree with you. I learn so much from each others experience. How can I join this ornament exchange sending gift?

Posts: 45
Joined: Oct 2012

I have said it before and will say it again. I don't know what I would do without this place to come. Whenever I have a concern, question, or issue I come here and find reassurance and encouragement. I love to hear about those of you who have experienced all of the things we newbies are just going through. It's such a help. Please keep updates. I'm just on day three after my first chemo treatment. I have only had a few things to work through. Little constipation (took stool softener) metallic mouth (lemon drops) and insomnia (Tylenol PM). I know everyone is different. Do the side effects continue until the second treatment or do you get a break for a while?
Thanks so much.

trixytwo's picture
Posts: 59
Joined: Nov 2011

Hi Suzanne. I haven't posted in a while, scared I guess that If I say all tests and reports have been good, that it will change next time. Im stage IV, and like I said, all last tests come back no disease. I also think I feel a little guilty that some are still going through the hell that is Cancer, and for that I am very sorry. I'm sure I will be back in the fight one day. Anyway, I remember you saing that you volunteer to help newly diagnosed patients and I would like to do the same. Any thoughts on how to get that ball rolling?

Hugs, Deb

MsGebby's picture
Posts: 659
Joined: Oct 2011

on cloud 9. I have Happy Feet! It truly is amazing to feel normal again. NED is my best friend. I don't even want to think about the beast anymore. I never wanted to think about it no less live it.

Now that my life is turning around, I seem to move farther away from anything connected to cancer. I hate that I have not been on here for a while. It doesn't mean that I don't pray for all my wounded sisters. With Christmas nipping at our heels, it is a time for me to reflect on all that God has given me. I ask Him to help my sisters and help all of our fine scientists and doctors find a way to beat this beast!

I've been busy decorating the house for the holidays. And I am excited with anticipation as my eldest daughter finds her way HOME ... she is flying in from Israel on Saturday! I get to have her for at least 4 weeks. OH Happy Happy Joy Joy!

With this note, I am sending Holiday Cheer and prayers for a Happy, Safe and Healthier New Year.

Love to ALL


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