Aletha needs our help

Aletha posted this in another thread.  I wanted to post it under this forum in hopes that someone can answer her questions.

Aletha wrote: Pam:  I cannot figure out how to post a new topic so I decided to go with you for now and maybe you can guide me otherwise or to others.  I have a difficult decision to make and was wondering if any others have been "in my shoes".  I have Stage IV tn breast cancer mets to lungs.  This has reocurred from 2007 when I was cancer free for a short.  Beginning in February of this year I started a 15 treatment procedure which has resulted in me being in remission.  After a short break, I have begun treatments again, 2 weeks on 1 off, but it is just becoming too hard for me so I have decided to skip Oct. and only have two first two weeks of each month as long as my CT scans continue to show no change.  My doc is leaving all of this up to me and the quality of life I choose.  I am so tired, stomachs problems and headaches.    My question is:  Is there anyone out there that is in remission and still on chemo ( mine, carbo and gemzar) It's just so very hard for the drs. to manage our disease since it can only be done with ct and I shure don't want any more of those that I have to.........I don't like to choose between quality of life and life.   Just doesn't seem fair but I was wondering if anyone can relate.   Great site to vent and to get support.  glad I found it.

Hi Aletha--I think my situation is similar -- I was diagnosed first in 2005 with tnbc --progressed in 2007 to Stage III and in March 2009 with another recurrence --this time with met to a lung --I am now Stage IV  I had been on Taxol & Avastin for 12 cycles and ended that it March of 2010 --through scans etc had been declared NED in August of 2009.  When I finished the taxol & avastin my onc put me on Avastin alone every other week for maintenance and I remain NED. Especially with the concern about Avastin we're just waiting to see what decision FDA makes because the Avastin may be dropped from my list of choices. In my mind Avastin has kept me NED so that is very frightening.  Last time we talked we talked of the possibility of no therapy until a recurrence occurs--have scans etc. set for first week of November and maybe choices will have to be forced at that time.  I'm so sorry you've landed in this group--but so glad you found tnbc site

I am so glad to get some feed back with this, eventhough it seems no two cases are treated the same anywhere.  I live in Austin area and have the upmost faith in my oncologist.  He has answered all our concerns with the exact answers as to every article and info I can get my hands on.  As far as trying clinicals and different drugs he says, which makes perfect sense, that why try something else when what we are doing with the gemzar and carbo are working right off the bat to put me in remission, which in the beginning he told me he thought would most likely never happen.  Unfortunately, first time around I stopped one treatment early in 2007 because of side effects of the chemo as well.  I have a very sensitive stomach and have never taken any medications throughout my life (62) due to be very healthy and also due to not tolerating even most antibotics so I am a challange to my doc in that area as far as the anti nausea, nexium, etc.  Seems I have more side effects from the medicines to help the side effects of the chemo and very hard to determine what is causing what.  I was excited to hear about the PARP inhibitors and lucky that I have something working now so that I don't have to be sitting here waiting for approval to use knowing that could be my only hope.   However, reading more info on that is not always "good news" in that they still don't know long term what it will actuallly do to our DNA.  As far as AVastin, I have never taken it and those of you who are I can imagine that you are in the same situation as me right now.  The good news is, although puzzleing since I am the 12th person with breast cancer in my family(only one with TNBC) is that I am BRAC negative.....Make sense of that one???  So, I am a medical mystery.  I just wish there was a way to manage this awful disease or know how fast it can spread.  All other cancers can be managed with blood test which if that was so I would definite stop chemo until growth shows, however how fast could it grow if beginning again?  I know I should count my blessings to be in remission and that God has graced me with this much success thus far, but like I told a friend when she ask me how I felt I said how would you like to have the flu, finally get over it and know that you have to go back and intentionally get it again three times a week?  Right now, I am thinking of trusting in my faith, good nutrition and exercise when I can and cut back gradually on the chemo and "see what happens".  It is a scarey thing to do, especially waiting on those dreadful results each time.  It really helps to talk to others, and don't sugar coat feelings at this point.  I think we all need to be able to vent and I have the most dr. in the world who answers the hard questions with the hard answers...  Thanks for everyones feed back.   Much needed and appreciated.

I know we are want answers, and it seems no one is yet to know them.  I only pray that answers are found someday, for our children and grandchildren.  I have 5 grandkids under the age of 5 and don't want to miss a day of their growing up years making decisions even harder.

Aletha, I am sorry that I could not be any help. However, As I am reading your post and see the results of your treatment. it is quite encouraging. My TNBC came back early this year and now have lung mets. I have been treated with Cisplatin in last 6 months. The latest scan showed that those lung nodules have grown from 0.6cm to 1.4cm in last 3 months. IT means the cisplatin did not work. My doc. wants me do Carbo/Gemzer as what you had before I will be selected to PARP trial. My questions to you are how many nodules were found with your lung mets? What are their size? Did you do any biopsy for those nodules? I know You have tough decision to make. but your case gives me a hope to see that it's possible to get NED for the Lung mets.  Thank you so much and best of luck on your decision.

I would very interested in what your dr. has to say this week and to keep up with one another and how we are doing.  you are actually only the first person I have been in contact with that is iin "remission" but yet is going to have to be on some type of chemo as you said "forever".....I have managed the first 20+ treatments pretty good but the last two kicked butt so that is why I feel my body needs some recovering time and hope to go to only 2 treatments a month.  Maybe we can exchange emails as well so that we can communicate with each other although I know our experiences can help others so I would not want to ignore this website at all.  aletha@austin.rr.com  I have been focusing on my nutritional needs as well as exercise but can say the last two weeks have not felt like "working" on that as I should.  I am looking into pro biotics to possible help with my stomach issues.  I have always had problems in this area and that is why presription drugs sometimes do me more harm than good for the side effects.  I am a challange as my doc says and right now am on nothing else except an occasional sleeping pill.  I am really happy that you wrote and hope we can stay in touch and hopefully help each other out.  Is your integrative dr. having you do anything in particular for the side effects?  I will keep you in my prayers.