Looking for Answers about Friend's Stage IV symptoms.

PTDonTeamCourtney

Good Morning Everyone,

This is my first ever post, and it is honestly out of desperation to get answers while my friend continues her fight against Stage IV metastatic breast cancer.  This probably will be long so thank you to those who read through it.  The basic background as to why I am so concerned is that she is not just a friend, or best friend, but my greatest friend.  We've been extremely close since high school, we kept each other entertained in class, and even dated for two years and she was really the only person who stood up for me and supported me during a very difficult time in my life.  And while unfortunately we found that a long-distance relationship didn't work and we both moved on and had families of our own, we always stayed very close.  And it absolutely devastated me when she was diagnosed with a very aggressive invasive ductal carcinoma stage III breast cancer in the summer of 2012 when she was only 29 years old.  This was a huge shock to her and everyone who knew her - she was the mother of 3 children, she breast fed, never had anything major like this in her life and then suddenly cancer.  I was already across the country for a new job and the fact that I couldn't be there to support her in other than words and moral support tore me up. But she got her treatment with aggressive chemo, and a double mastectomy in early 2013, followed by radiation treatments of the area of positive lymph nodes.  In June 2013 she got an official "no signs of cancer" diagnosis and thought everything was behind her.  

Then in January 2014 as she going into a final check up in preparation for a planned hysterectomy since during her fight with the original diagnosis it was found that she does carry "the gene" for ovarian cancer (I apologize for my ignorance since I know it has a name), she found out that she was unexpectedly pregnant and so that put everything on hold.  She was scared and upset that it happened, but she took it as a miracle - for starters when she was younger she was actually afraid she wouldn't be able to have children due to endometroisis and she had always had difficulty conceiving her first 3 children.  But by April, she noticed that she was having occasional severe pain in her hip, but all of her doctors, including her oncologist, looking at x-rays said that it was most likely just her ligaments and such, or that her body was really still just stressed from everything she went through, nothing was showing up but her markers were rising - but they attributed that to her being pregnant since I guess the markers they were looking for also show up during pregnancy.  However, her pain got worse until finally this past June her oncologist said they needed to do what they could get a CT scan even though she was still pregnant. That is when the found evidence that her breast cancer had metastasized to her pelvic bone.  They decided to start moderate chemo because she was far enough along in her pregnancy and planned for an emergency c-section a month later.  She had a healthy baby boy, and a short time after did a full PET scan, and ultimately found that she not only had a bone met to her pelvis, but also a small met on her C2 vertebrae - that one being the more worrisome for everyone because of its location on the spine. 

So once again, they put her on aggressive chemo therapy and radiation and it seemed to be working - she actually felt better (and would say better than when she was on her first round of chemo and radiation).  She still had her off days, but the bigger concern was that occasionally red blood cell counts would drop - usually attributed to her chemo. She'd get a transfusion, and then later go in for chemo again.

However, about a month ago, her oncologist decided to order her to get this shot that was supposed to naturally encourage her blood count to rise and she'd take a two week break from chemo.  That about knocked my friend out, she said she was constantly sick, nauseated, headaches, etc - all apparently symptoms of this shot.  She went in, but it didn't raise her blood numbers. That kind of started her latest frustration with her situation - which as a friend and "observer" really scared me more than anything.  She's still never had a "defeatest" attitude in this whole process, she had always said she is going to fight this until it does take her, but that was the first "if it's not going to help me, why am I doing it."  

This kind of brings me to the last two weeks.  In that two weeks ago her newest started having trouble breathing and so she had to go through the whole stress of an emergency visit - and the doctors couldnt give her an answer.  They stabilized her baby, got him breathing normally again, but couldn't explain anything at all - he wasn't choking on anything, he didn't seem to have any health issues, and they attributed it to it was "lucky" she saw he was having trouble.  But that obviously scared her (as I think it would any parent) to where she said she couldnt sleep for roughly 2 days because she wanted to keep checking on him.  

It was after that that she told me she started having extreme migraine-like headaches that would either cause extreme nausea or vomiting.  They'd come and go.  But she initially attributed it to stress from the incident with her baby.  However going through a weekend of that she called her doctor and was told to get to the ER for scans.  They took a CT scan of her brain and found no signs of any brain mets, no bleeds or anything wrong showing up on the scans, and her tumor markers have not elevated at all since starting her latest treatment.  However, no pain management or anti-nausea medication is helping at the moment and she still feels terrible.  However, some more background info is that as long as I've known her she has, unfortunately, always had some seemingly natural tolerance against pain medication (for example NOTHING ever worked when her endometreosis flared up but I know that's an entirely different issue) and anti-nausea stuff actually seems to set her off - during her first round of chemo during the initial diagnosis she always said that the anti-nausea medications actually made her more nauseated than to not take them.   

And so now, she has been in the hospital for a week with extreme headaches, nausea/vomiting, and no relief from medication.  And so that I why I've come here - she's been on very limited time to update me or has been on "radio silence" and so I don't have much more information other than her latest update that she is "being kept to undergo procedures for more scanning".  I know that most people here are probably not doctors, and I know that even as a friend I am limited to so much information since I'm not immediate family even if I was to rush to her bedside now.  And so I am just asking anyone - has anyone else had someone go through, or have any survivors gone through a similar instance that might explain my friend's latest troubles.  I wont lie, when I got the text saying she was going in for brain scans last week, I was numb - this whole experience it has always seemed that any good news she's received is followed shortly after by devastating news that undoes everything.  I was heartbroken for her, expecting the worst and so I was so relieved when I got a follow up text that evening saying that scans all came back negative.  But that was a week ago and her symptoms havent changed.  Everything that I've researched comes back with "it's brain mets", "its the C2 tumor putting pressure on the spinal cord," "it's the low blood/stress/etc" and other things that it would think could have been found or dismissed by this point.

I wont lie, I am scared for my friend.  I still text when I can but don't hear much since she's been admitted just because I would hope that she's doing as much as possible to relax.  She updates she can, but I make sure to keep it short. And so I'm just wondering if anyone here can give any insight or advice for a friend who just wants to hear that his friend is going to get the help that she needs and be able to go home.

pajim

Dear Don,  You sound like a great friend, and I'm sorry for her difficulties.  I gather from the fact that she started with chemo that she has triple negative breast cancer.

If her scans show only the mets to pelvis and C2, that's all she has.  Which means she certainly isn't gonig to die from her cancer tomorrow.  Or next week.

BUT.  It sounds to me like she has had an adverse reaction to recombinant GCSF (which they use to raise white cell count) or erythropoetin (which they use to raise red cell count).  Coupled with her inability to metabolize the pain meds means a mess. 

I do have a suggestion about the pain meds.  A subset of the population cannot metabolize morphine correctly.  They need to get it in a different form.  I have a friend with this problem.  They give morphine and it doesn't help.  So they tried Dilaudid and it worked great. 

Might you want to be in touch with her husband or partner?  Ask if there's anything you can do to help?  You could suggest a visit either now to help take care of the kids or later once she is feeling better.  Her family must be even more overwhelmed then you are.

PTDonTeamCourtney

Pajim,

Thanks for the reply.  I passed on some of the info you mentioned but it unfortunately turned out worse than they originally thought.  I'm only going off of a brief update she gave me via text, but there is something wrong with her blood-brain barrier and that as she put it it is "broken."  She didn't elaborate on a prognosis other than she was going to talk with her family - so that cannot bode well.  

I've been doing what I can from for support with donations, food trains, and such from so far away - she is in Michigan, I am in New York.  Needless to say tonight's news has left me numb and my heart is absolutely breaking for her and her family.  Hopefully there will be more of an update soon.