chemo behavior (warning, my post may be very boring)

Hi, I thought I will as a question instead of answer one today. (I really feel like having a little back and forth talk like so many have had lately, and which did not used to be the case)

I have one other wish as well. Please do not tell me to ask my oncologist, or other doctor, since I already know this, and have asked. I also know that the answers I have received are guesses, and that is OK.  (but  there are more people than doctors who have valuable information to share, and they are more free to do so as well?)

Sometimes one can get information from other people's experience, or what they know from family and friends who had/have cancer, or even another patient who shared on a forum like this. I'll take everything of course also from people who have not themselves have had cancer, and who are often so 'on top of things'.

I am undergoing chemotherapy for the third time due to advancing bc and mets. (Ixempra) Prior to that I was on Abraxane which I loved, as it immediately, as well as continually brought down my   rapidly increasing tumor markers, (from about 500-200), I felt great, had no bad side effects, and the chemo was infused in 30 minutes vs. the usual 3 hours, like the one I am now getting.

But after a few months the Abraxane stopped working, and in a matter of weeks my tumor markers went up from about 250 to 1800. (I was not able to start immediately after quitting the Abraxane because my cancer had invaded my spine, and it was so brittle with some breaks that I needed Emergency radiation first) The day I finished radiation I started the other and have now finished three treatments.

My point and question relates to the fact that my tumor markers have not gone down but slightly up. (I am not concerned about the 'slightly up' but about the 'not coming down.)

I am pretty sure that the chemo must be working somewhat and that without it my markers would be a lot higher, but then I am also wondering if maybe the chemo is not working well enough, or at all.

I wanted to know if anyone has had this experience, and how it was managed. Did your onco  switch you, and at what point?

Thanks for listening; i realize this post is long and perhaps boring as well, to many.

Katrin

[bluebutterfly2222]

Hi Kat,

I don't have an answer for you today, but I want to say that this is not in any way a boring post!

It's a serious and important issue, and I hope someone will have had some experience with this situation, or other good information to share with you...

I wish your doctor could come up with a chemo that would actually make your marker start going back down!

♥♥,
bb

[bluebutterfly2222]

Hi Kat,

I don't have an answer for you today, but I want to say that this is not in any way a boring post!

It's a serious and important issue, and I hope someone will have had some experience with this situation, or other good information to share with you...

I wish your doctor could come up with a chemo that would actually make your marker start going back down!

♥♥,
bb

[bluebutterfly2222]

p.s. I found this, which says the treatment  should be changed when the cancer cells becomes resistant and start to grow. (But I don't know if increase in the markers tell them that, or if they go  just by radiographic evidence...)

"In general, most women with metastatic breast cancer will be treated with several different types of therapy over the course of their disease. Over time, cancer cells become resistant to a treatment, and will begin to grow. When this happens, a change in treatment is needed. Unlike many other types of cancer, breast cancer cells can be controlled by many different types of chemotherapy, and women with metastatic breast cancer are living longer and longer. Hopefully with further research, women will no longer die of this disease in the future."

[bluebutterfly2222]

Here is another way to tell if a treatment is working:

"In addition, a blood test, called CellSearch CTC, shows promise in helping to manage treatment of metastatic breast cancer. The test measures the number of tumor cells circulating in a sample of blood and can immediately inform physicians if a patient's treatment is working or needs modification. Research has shown that if a patient typically has more than five CTCs in a blood sample, survival may be shorter compared to patients with no CTCs. The CTC test can help physicians monitor whether a patient's treatment by determining whether the number of cancer cells is decreasing. This information can help determine whether changes are needed in a patient's treatment. While the test is used independently--typically before each chemotherapy treatment cycle--health experts do not recommend that it replace existing tests to monitor disease progression, such as the CAT scan or PET scan. Instead, it can be a useful supplement to those tests, which are often administrated every 12 to 24 weeks."

[katarina777]

I randomly picked that one post for 'best answer' even if it was not picked out for that purpose. I meant to give you the 'best answer' for the whole package of your resonse? kat

[SueYoung55]

((((((((((((((gentle hugs to you)))))))))))))))

I wish I had answers but I don't. I just wanted you to know that I'm thinking of you and praying for you that you go into remission.

[zouzi]

Hello Kat,
Of course I join bb,and Sue, in wishing you all the best Kat.
Sorry I couldn't comment on your post sooner...I just got home a few minutes ago.
Kat,your post is NOT boring.. quite the contrary! I wish I could do or say something to help you and make you feel better,but I don't know much about your situation... The only thing I can say to you is that you are a very dear friend to all of us and I am sure that you are always in their minds and prayers as you are in mine.
Thank you dear Kat for posting...We all love you and care for you more than you'll ever know.
Sincerely...
Sue♥

[katarina777]

Thank you so much, SueYoung55, and Sue, for your support and kindness, and for responding even if you knew 'sh*t from shinola' about the topic,  as my aunt used to say. (which also goes for many doctors and who have shared these feelings with me, as well as the fact that they are hardly perfect and make mistakes, and don't know nearly as much as we sometimes expect them to know.

All of our treatments are pretty much still a research process, and that is why it's so important that we as patients are active helpers, and diagnosticians as well, and work together with a team'...plus like we do here.

Someone said that they felt the following part of an article that bb posted was not much different than anything else every internet site tells you. (I think it was on a different site where I read this)

She was right in saying that most research one does on the Internet brings the same, or similar results, (minus new research), and that it is often presented 'automatically', or identically without providing the reader/patient/curious with much inspiration, or  what they were hoping to find. Often,
investing so much and getting so little back, leads to profound disappointment.

But it is the following reason why I gave bb the 'best answer award', and specifically and mostly for these last few paragraphs.

They were not spoken in a stereotypic, boring and repetitive voice, and I was not left disappointed and empty, or just the way I usually feel.....

The words actually touched me on a much different level, and  with a much deeper understanding, and very satisfied,. i really learned something that directly touched/related on/to my question, (but more), and I felt happy after reading it, I felt good.

(My 'best answer' was to that paragraph and not because Blueberry is my friend. (which makes me think that bb may be my friend because she has the ability  to pick out such quality, and that says as much about her as the author)

On top of all, she is always taking the risk of being unappreciated, or rejected when she sends stuff to us, or ignored, and which is even worse.

To me bb's  courage is familiar, and  even when you make mistakes sometimes, or cannot please everyone, bb nailed it for me.

One of my favorite quotes, and that I find so profoundly true is the following:

' Taking no risks is risking everything'    Dorothy Satten

(my mentor for many, many years who had amazing influence on me, and my life because of  her teachings, and the wise and special person she is/was)


KATRIN  


To: katarina777
Here is another way to tell if a treatment is working:

"In addition, a blood test, called CellSearch CTC, shows promise in helping to manage treatment of metastatic breast cancer. The test measures the number of tumor cells circulating in a sample of blood and can immediately inform physicians if a patient's treatment is working or needs modification. Research has shown that if a patient typically has more than five CTCs in a blood sample, survival may be shorter compared to patients with no CTCs. The CTC test can help physicians monitor whether a patient's treatment by determining whether the number of cancer cells is decreasing. This information can help determine whether changes are needed in a patient's treatment. While the test is used independently--typically before each chemotherapy treatment cycle--health experts do not recommend that it replace existing tests to monitor disease progression, such as the CAT scan or PET scan. Instead, it can be a useful supplement to those tests, which are often administrated every 12 to 24 weeks."

[bluebutterfly2222]

Thanks Kat!

There are MANY (such as YOU!) who work hard here, sometimes with not much appreciation expressed  by the people we answer, and other times with such gratitude for the smallest effort, that it brings tears to my eyes...

What also keeps some of us going is the friendships and camaraderie with one another we experience among "the regulars."  (I'll never forget that  Saturday night when you gals all got so silly over my display of chocolate goodies!)

♥♥,
bb

[bluebutterfly2222]

p.s. And you thought this thread was going to be "boring," LOL!

[SueYoung55]

We could do a lingerie show later this week........................... LOL

If not exciting it CERTAINLY would be interesting!!!!

[zouzi]

Hey girls,
Maybe bb's lingerie are exciting and interesting!..Always matching things up!.She might even have butterflies on them! "BLUE",of course!
My husband says that mine look very nice...........The liar! LOL.....

[SueYoung55]

hahahahahhahahhaha

you cracked me up!!

[bluebutterfly2222]

Oh, no--I can't believe you revealed my (Victoria's) secret!!   ;->

[ncmichigan]

Hi, Kat,
I don't have any additional information either, and I'm so sorry to hear your treatment isn't working for you. My heart truly aches to hear such sad news. I'm sure I have no way of knowing what you're going through and can only hope that things can turn around for you. I just wanted to say that I've read many of your responses over the past year and a half and I appreciate your knowledge, dedication and generosity in this forum. Like you, I also appreciate bb, zouzi and Sue Young for all the help and support they've given me on my own issues and to so many others. I am truly grateful for everyone here who takes the time to help others. Bless you all! ♥
nc
PS: Kat, your post was NOT boring, but my lingerie definitely is!!! Maybe I could use that lingerie show after all!!!

[katarina777]

Thank you for your sweet comment.

For the rest of you, my secret is that I no longer wear any underwear at all, because everything touching my skin that is the slightest bit irritating, is tossed.

I also never wore a wig, or the other thing people use when they don't have reconstructive surgery.

Yet, I don't rub it in, and I  wear scarves and bulky clothes.    
As  for my cap revealing my 'patient status', it doesn't bother me as it seems everyone treats me like royalty in my condition, sort of like when you are pregnant?


Katrin

[bluebutterfly2222]

Kat,

Sorry your very serious thread veered off into a bit of silliness (although knowing you as I do, I'm sure that's fine with you), but even though we haven't  come up with any definite answers, it  has become the back-and-forth kind of thread you mentioned, maybe brought you a few smiles, and has given some of us  the opportunity to make sure you know how much we care about you, value you and all your work here, and hope and pray that things will look up in regard to your BC responding to treatment!.

♥♥,
bb

[katarina777]

Was  there anything serious about my underwear question?

No, I feel unsupported, not cared about and neglected by all of you, not to mention unappreciated! You all hate me!

(KIDDING!)  Kat

[SueYoung55]

I was like you, no wigs and no bras.... but I admit I never considered going without panties. I wish I had thought of that because it seems so liberating! It's funny but no one ever noticed I was "one sided" when I had only one breast and I was like that for a year & a half.

I actually enjoyed being bald since it was cooler for me since I seem to be a walking hotflash. With my luck if I'd gone without panties it's a sure bet I'd have had a huge wedgie following me everywhere I went!

I hope you didn't mind the silliness... it was meant to make you smile when you really don't feel like it.

ps... now that I think about it, BB never did share that chocolate with us!
pssss.... you are royalty!

[zouzi]

Kat you are simply a real sweet "DARLING"

Your sense of humor is the best! You really made me chuckle!

Luv ya!
                                        
Sue♥
                                                  

[SueYoung55]

Please have your oncologist check into PARP Inhibitor Trials. Here are some things to read and perhaps pass on to him/her. Kat, it's doing good things for advanced cancer patients. Please check into it.... see if it's available for non BRCA patients.

http://www.facingourrisk.org/information_research/new_findings.php   reading material....

Best wishes

[katarina777]

Sorry I have not been around a lot. Just wanted you to know that I have not vanished, or forgotten about you, and your caring. I would never just 'take off' unless I absolutely had no choice about it?

I had a CT scan yesterday and am seeing my onco tomorrow. I hope he has the results by then. I will let you know one way or the other.

You all take care as well! Thanks SueYoung55 for your good wishes,

Katrin

[bluebutterfly2222]

Wow, I just noticed how long it's been since the last post (before your new one) on this thread.

Hoping you get good--or at least "okay"--news tomorrow..

♥♥,
bb

[SueYoung55]

I know you're having a rough time Kat and I wish there was something I could do to help.

I'm not an artist like you are but I'm going to put up a picture of my cancer experience painting that's still in progress. You'll notice the canvas is only partially done. I thought you could use a giggle.

[zouzi]

Thanks for the update Kat,
I am also hoping and praying that you'll get good results!
We'll keep waiting with you....
Good luck!

[ncmichigan]

I'm just adding my good wishes, too, and sending a really big hug (       ),
nc

[katarina777]

Thank you, I cannot believe you all responded again. Just got my results, and....it won't be long, and want to let you know. K

[SueYoung55]

(((((((((((((((((((Katarina)))))))))))))))))))))

You are the only woman I know who gives of herself so generously while dealing with advanced cancer. I am so sorry the news you received from your doctors is filled with grief for you, for your family. Please know we also grieve over this news.

God Bless you and yours.

[zouzi]

Kat,I am so sad...I  am at a loss for words!
All I can tell you is that we are here for you,praying for you,grieving with you... And most of all to let you know how much we all love you and appreciate you.
You are very dear to us all!
God Bless you Kat.

[ncmichigan]

I am SO very sorry to hear that you got such terrible news, Kat. I haven't been around here as long as many others, but it is so heartbreaking to hear. You have been a such an inspiration to me---so generous and strong and you managed to keep your sense of humor through it all. My thoughts will be with you and your family as you go through this journey. I can't imagine how hard it will be, but I hope it's peaceful. I am reminded of something said about Elizabeth Edwards: She stood in the storm and when the wind did not blow her way-and it surely has not- she adjusted her sails.God bless you all.
Hugs,
nc