Residual Cancer after Neoadjuvant, what to do?

Hi, be sure they check/monitor your thyroid while they're figuring this out as the two may end up connected.

My sis developed Addison's after/during chemo when she developed mets. Unfortunately her first set of doctors didn't figure it out until it was too late for her. She developed a severe case of nausea and threw up constantly. When I finally was able to get her in to see my onc he discovered the Addisons but by then her treatments had become so messed up she really lost ground.

I really don't think it's uncommon, just unrecognized. With so many people complaining of the common side effect of fatigue during and after chemo my personal opinion is that the adrenal fatigue gets lumped into the common version of chemo fatigue and so isn't pursued.

I know when I looked back, after hearing her dx and looking it up online, that I had many of the same symptoms.

I've never been BRCA tested nor was she, our original doctors said no to the test.

Thank you. I think you are right mainsail the addisons does get overlooked. I will see my oncologist next week and see what he has to say. I still have radiation treatment to complete and will start that in April sometime. None of my Docs have said anything about treatments after radiation. I will ask about it at my next appointment. I really appreciate all the info you all have shared on this site. That gives me possabilities for treatment. They also havnt talked to me about follow up screenings.
Im just taking it one day at a time. Right now Im so glad that they have pain medicine after surgery. I was part of a study the anesthisiologist did for surgery. He did a Thoracic spinal block and it worked great for pain. I was still asleep but didnt need the heavy stuff. It made recovery a lot better. I felt nothing for several days except some rib pain. So anyone out there who is going in for mastectomy ask who your anasthesia doc is and talk to them about using the spinal. It makes recovery so much better.
   

So my appointment went so-so. My doctor is hard to read and it very medically scientific. She is a very "standard of care" type of doctor and if it was up to her she would say I am all done with treatment. She is only offering more chemo due to my insistence. What she is willing to do for me is either carboplatin once a week for 12 weeks or Xeloda (she didn't get into doses but said it was 18-24 weeks of treatment. I can tell she is more pro carbo because at least there are studies. In fact there is a new trial coming out testing TN women in an adjuvant setting with patients getting either Xeloda, carbo or nothing. They must feel these 2 meds are worth looking into used in this setting! At first the study was going to just be carboplatin but now they have added Xeloda. They are comparing how BRCA+ and - react.  

Hi Bethie, I sure know what you mean about looking at the size of tumors. Take a look at my signature and check out the size of my tumor. That's not a typo! You can PM our resident super advocate Steve or Sage Advocate to ask if he has suggestions in the Cali area for a 2nd opinion. He's very knowledgeable and a kind helpmate to boot!

Hi All,

Hi Tulips,

Hi there,

No worries at all. <3

Thanks Tulips. I talked to my surgeon about all of this because he is the one who created the cancer center at my hospital. He said its sad that we the patients are having to look at all these studies and try and get our docs on board with using them. We dont have the years of training our docs do. He also said unfortunately some places also want the money. They are basically sales men and i have to beware of them too. But he said the average oncologist has thpusands of patients and is working 10 to 12 hour days and then is on call every evening. They simply dont have a lot of time to help us wade through too much of this. I know my own husband who is a physicians assistant in pathology really does work 50 to 55 hrs a week but doesnt take call. It sounds to me like an opening for a new position in cancer care. A patient advocate who can help with the research part. We do have a research person on staff who tries to help the docs now.
     Anyway cudos from an old surgeon for taling it upon ourselves but also caution because things can sound better than they are. Also watch out for the wolves in sheep clothing just trying to sell us a bill of goods.

Thanks for validating my feelings Tulips!!  I totally agree, I don't think I am done with my questions yet.  I sent her a bulleted list of reasons why we should try it (more like a long list of reasons as to why not).  I hope you don't mind, but I even mentioned that you hadn't had any side effects yet, and I tolerated AC/Taxol/Carbo with minimal side effects (I worked the whole way through), so I would imagine Xeloda would be the same.  She responded that she'll call me to discuss this afternoon.