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Feeling like I am not doing enough...

MrsBob's picture
MrsBob
Posts: 28
Joined: May 2013

This is my third time fighting breast cancer since 1999 and I have it in my lungs now.  I took Xeloda for two months and my tumor markers went up. The chemo pills were kinda hard on my body and i had alot of minor side effects. However, since the markers went up i no longer take Xeloda and I started taking Arimidex. Just taking one tiny pill a day. No side effects yet. I just feel like i am sitting by and not doing anything to fight this cancer. Has anyone felt this way?

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

If you are concerned about not doing enough, talk to your onco and ask why this is the only trearment he/she offers.  If you are not comfortable with his/her answer get a second opinion.  Your peace of mind is part of your treatment too.  Don't let them brush you off.  You are worthy of the best treatment possible.

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

I have and I know what you mean, but big bad chemo is not necessarily what is always called for.

I don't know your history, but I can share some of mine.  In 2009, after a very long remission, I was diagnosed with lung and bone mets.  I started arimdex and zometa (zometa for bone mets-like boniva).  I switched to a different hormone therapy (faslodex) when I wasn't responding like my onc liked. 

The faslodex put bone and lungs in remission.  I never had bad side effects with any of those therapies and it sometimes felt like I wasn't doing enough.

Recently, I developed liver mets.  Liver mets is estrogen negative (first time my cancer has tested that way) and her2neu positive (also first time my cancer tested that way).  I am now on herceptin, perjeta and taxotere.

Missing the hormone therapy!  This is tougher.  BTW, my lung and bones are still in remission.  Weird, I know!

MrsBob's picture
MrsBob
Posts: 28
Joined: May 2013

Hi! Thanks for your reply. I was wondering when your lung mets went into remission, was it gone or just not growing? I want so much for my lung mets to be gone. I hate the thouht of it in my lungs. I was told i would probably just keep it at bay the rest f my life but i would rather it be gone.

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

I don't think practitioners speak much about metastatic cancer being "gone" anymore, but I have had no active evidence of disease in my involved lung since August 2010 (started treatment in 4/09).  My lung is still scarred but there is no longer a pleural effusion or any activity on PET.  Same with my rib mets.

A very smart pulmonologist made me feel a little better about the lung mets by explaining that lung mets is not lung cancer. Breast cancer in the lungs can progress much more slowly (my CT scan was suspicious in 2005, but I did not get official mets diagnosis until a biopsy of my ribs in 2009-my scans did not progress that quickly during that time).   That pulmonologist's words have always comforted me.  He said lung cancer is much more aggressive in the lungs than breast cancer in the lungs. 

Sending hugs and lots of hope!

MrsBob's picture
MrsBob
Posts: 28
Joined: May 2013

Thank you so much for your information. It helps to hear positive things like that. 

I have an area in the center of my lungs that look like scarring with a few tiny dots. The pulmonary dr said it looked like radiation scarring or like i had bronchitis at one time. He said with my history of breast cancer i should have a CT. I also had a PET and thats when it showed the nodule in my right lumg which they biopsied and ended up was my breast cancer. Nobody ever talks about the scarring anymore and i wonder if its cancer also. That "scarring" and a "lesion" on my T9 and the tiny speck on my back hip bone are all concerns but nobody talks about. I guess she figures if we kill the nodule the rest will go away also. Im glad to hear breast mets is slow. My cancer is slow growing kind anyway so im thankful for that. Hard telling how long i have had it in my lung. 

I appreciate anything you have to share and you are such a hero to me. God bless you.

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

Not all breast mets is slow, but my lung mets has really done little since 2005.  In fact, between 2005 and 2009, I had pneumonia twice and was quite ill with Coccidiodomycosis (Valley Fever) which I apparently picked up on my travels to California because there is no Valley Fever around Louisiana (Lol).  I had never ever had lung problems or pneumonia--no asthma, nothing.  As soon as I started treatment, no more weird illnesses.  And I was so short of breath then.  Now, I am pretty much normal.

My liver mets has not been slow.  I had had normalizing markers and good scans and then, this February, had abnormal liver function tests, a big spike in my markers.  We did another PET and it showed 231 lesions in my liver.  Wow that was fast! This time the cancer had morphed into ER negative and Her2+.  I don't share this to scare you, but I do want everyone to be vigilant.  Cancer is so darned evil and sneaky!

I believe I am responding again to treatment though and I am very encouraged that my last liver function tests were almost normal.  I should get another PET in a few weeks, so I'll keep everyone posted.

For some of us, breast cancer is not curable but may become a chronic disease.  In my case, after 26 years, that is certainly the case.  Big hugs and prayers coming your way!

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

My prayers are with you both.  CC your info was really eye opening and I hope it brings you peace MrsBob.

Sandy

MrsBob's picture
MrsBob
Posts: 28
Joined: May 2013

Yes, your information is so helpful! I thank you and Sandy for the comments, i really have no one else to talk about this with. I think i try to shelter my family like i did 14 years ago when I first had it. I think at this point the onc and my aunt who is the onc nurse dont really know what to expect from my cancer and is waiting for the meds to work like i am. But i really need more than that sometimes.

Now, you mentioned "lesions". How are lesions different then cancer tumors? I supposedly have a lesion on my T9 but thats one nobody really talks about when i have my tests and scans. I think its small. I would not be surprised to have them in my liver someday. I have a small cyst thats been there since 1999 but no progression and no uptake on the pet scan for now. 

My onc definately said i will never be cured and i will fight this disease the rest of my life. Not really looking forward to that but what can u do?! 

Thanks so much for your replies!!!

Melissa

MrsBob's picture
MrsBob
Posts: 28
Joined: May 2013

By the way...what are your markers now and what were they at different times of treatments? (If you dont mind me asking:)

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

I honestly don't remember so I will have to look them up for you.  I remember that my CEA had stayed elevated since boneand lung mets (maybe 14), but my CA 27.29 had come down to normal after treatment for bone and lung mets (I believe ~28).  Both went up after liver function tests came back abnormal.  And I want to say CA 27.29 was a big jump (maybe 70).  We then did the PET/CT which stated unequivocally that I had metastatic lesions in my liver (231-but who counts anyway...Lol).

Because I can access my labs at work, I never worry about keeping them.  But I haven't worked since I started taxotere, perjeta and herceptin-on medical leave.  I haven't really wanted to run over and print out my labs because I know the hospital and hugging coworkers is not a great place to be with a WBC of 1.1 and low grade fever (99.6), diarrhea, thrush, etc.  And my sweet coworkers say stay home until my counts improve.

When I do get over there, I will look them up for you.  I don't mind sharing.  Lol, I just have chemo brain Wink.

peanutcat's picture
peanutcat
Posts: 104
Joined: Mar 2011

Mrs. B

Just be UPBEAT, that is plenty.

peanutcat

MrsBob's picture
MrsBob
Posts: 28
Joined: May 2013

Hi Peanutcat, I am usually upbeat and full of smiles, just sometimes I think about it and would like to be more informed. I am learning to relax and be patient. I got the most wonderful card from my sister tonight. It was a turtle with a bandage and it said "It's not the speed that matters, it's the getting there." She is my biggest fan :-D

Melissa

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