June 2011 A/C & T Groupies Unite!

cider8

Kat, my eyes are OK.  I wear contacts all the time and I haven't had to stop wearing them at all.  I feel your frustration, as I hate wearing my glasses. I have, however, developed hypothyroid.  Along with hypertension (crossing my fingers that's a result of hypothyroid).  So, yeah, the gift that keeps on giving.  While those are issues that will take a while to balance, they aren't 'terminal.'  Still, it's frustrating to have a good deal of lingering fatigue, which certainly doesn't give me the boost I need to get back to my old self.  

We must continue to be gentle with ourselves!  Oh, my eyebrows are falling out again, too.  At least some little new hairs are there so my brows don't get completely bald.   

kks_rd

Hi everyone. Hope you all are doing well...!

I hope it's OK to repost something I posted in a separate thread on this forum. I was a little disappointed in the replies I got and realized perhaps I should be reaching out people with whom I went through this.  *shrug*

~~~~~~~~~~~~~~~~~~~~~

I finished treatment about six weeks ago, and had my first follow-up with one of the ROs earlier this week. He wasn't my usual person but a doc that I had seen at least once before. Was talked a lot about my "surveillance" plan - what imaging I should have when, how many follow-ups per year, etc. First of all what he told me was totally different than what my BS had prepared me for - less aggressive monitoring. I called the RO on it... I was diagnosed at age 32, triple negative, BRCA1+... why on earth would he want me on annual mammograms only? (He did agree to consult with my BS, and later called to let me know they would follow the surveillance plan BS recommended. Phew!)

But that's not the most disturbing part. I asked him when I could consider myself more or less NED... I was so anxious during this appointment I don't remember what I said exactly, but I forgot to term NED. Instead I mistakenly said "in remission" or "cancer-free" or some other erroneous term. So he went into this long explanation about "we can't ever really say you're cured" and "there are no guarantees that you are cancer-free"... okay, FINE. I get it, you don't need to remind me of how uncertain life after really is. Sorry I goofed on the term, jeez. But, at the end of that belittling little diatribe, he did conclude that as of that visit, he considers me NED.

You would have thought I'd jump for joy! That's what I've been waiting for almost a year to hear! But it was terribly dissatisfying, and I can't put my finger on why. Is it because he only did a clinical breast exam, and I haven't yet had any imaging that "proves" it? Or is it because the news was only delivered only after that 5-minute lecture on how nothing is really certain at all? I feel like I've been denied the opportunity to feel any sense of victory.

Or is this how it feels for everyone?

pebee

I think it is timing.  I am reading a book about after cancer treatment.  The authors theorize that about 2-6 months after active treatment, most people go through a PST issue - we have a bad case of post tramatic stress.  I know that I am upset, mad, angry, and depressed.  I have no sense of the positive or the a sense of victory.  Maybe if you had this news two months ago or six months later......

At any rate, I hope that they have the scans straightened out and I would be interested in how the others are feeling now.

LuvRVing

I think I understand how you feel, Kat.  I also think I am lucky because I had a scan less than two weeks after finishing chemo and I got that confirmation that I was NED.  Without a scan, all you can do is trust that treatment worked. And as for guarantees, well...there's no guarantee any of us will wake up tomorrow morning.  Sometimes, remembering that little truism brings everything into perspective.

Hugs,

Michelle

ssmith37

Hello all. I hope everyone is doing well.  Kat, I just read your concerns again, and I feel the exact same way.  And, pebee, I totally agree with the PST.  I've been finished with treatment for five months now, and am still so freaked out by everything - especially now. I would sure like to get some input from you guys since we went through this whole thing at the same time.  I haven't gotten a response on my post in the other forum.  Here goes.  A few weeks ago, I began having pain in my upper back on the right side with breathing. I've had the pain before, so figured it was just an "air pocket" or some kind of crick and that it would go away on its own. It stayed for about a week then radiated or spread to my chest on the right and it was very, very painful to breathe. I decided to go to the ER to get some relief. While I was there, they did a chest x-ray. The doctor wasn't convinced that nothing else was going on, so he also did a CT scan. The CT scan showed multiple bilateral opacities with some measuring up to 1.4 cm. It also showed hilar and mediastinal lymphadenopathy. The doctor said I have pleurisy and, based on the CT scan, I need to follow up with my oncologist. So I did, and had a PET scan this past Friday and a lung biopsy on Tuesday.  As they were prepping me to have the biopsy, the radiologist kind of went over his conversation with my oncologist regarding the PET scan (I still haven't seen it), and told me that what showed up on the PET scan was many, many nodules, but they were tiny. There were 3-4 that were a little larger though and had a SUV of 3-4.  He told me that he questioned my oncologist about the reason for doing the biopsy because, based on those results, he normally wouldn't be concerned. My oncologist told him he understood that but, because of the triple negative status, he wants to stay on top of everything. Does anyone have any thoughts on this, and do any of you think I may actually be facing stage IV?  I'm so scared and sick to death of being sick and tired and hurting all the time.  I still have bone pain, am short of breath, and it just all seems to be getting worse instead of better.  I even quit my job in April because of the anger and the feeling that I never got any rest during the treatments.  Now I'm just at home feeling guilty for quitting because our bills are so behind, but at the same time, feeling like I deserve it and anyone who has anything to say about it can kiss my . . .  Ya know?  I just want to feel happy and energetic and useful again.  The radiologist also said spots highlighted on the PET on my lower spine and pelvis.  So, I'm not only worried about lung mets, but bone mets as well.  I'm just so sick of it!  I meet with my oncologist tomorrow morning at 9:00 a.m.  Tomorrow is not coming fast enough.

Sorry for the venting.

LuvRVing

Vent away, Stephanie!  That's why we are here!  And I can understand why you would be concerned!  Try not to anticipate the worst case scenario; if it turns out to be true, you'll have lived through it twice.  And who needs that?  Easier said than done, though!  Sending hugs and positive thoughts for a good outcome tomorrow.

ssmith37

Thanks for your response, Michelle.  Turns out it is lung mets, is inoperable, and without chemo, I would probably have 3-6 months to live! Wow! I may have bone mets as well. I will have a bone biopsy on Monday, along with the reinsertion of a port for chemo that will start next week. Carboplatin, Gemzar and Zometa. My onc says the side effects are nowhere near what I suffered with A/C and Taxol. I hope he's right.

LuvRVing

Oh Stephanie, I am so sorry that it turned out that way.  I have lung mets, too, but no bone mets yet.  It's all so hard to process, especially at first.  The chemos recommended for metastatic BC usually allow for a better quality of life than the big guns like A/C.  I'm taking Xeloda and it hasn't been too bad so far.  Please come over to the Stage IV forum - there are lots of us over there and we really help each other.

ssmith37

Thanks, Michelle.  I will head on over to the Stage IV forum.  Not to say I was stalking you, but I have been reading some of your posts searching for answers while waiting on my results.  I was shocked to see that yours had metastasized as well.  I'm very sorry.  It is very difficult to process, especially for my husband.  He just didn't understand the chances for recurrence were so high.  I've been trying to console him most of today since I had my first real breakdown yesterday - before I even knew the results.  Had to hold my mom today too while she broke down.  Then I had to listen to my sister break down over the phone.  Only one of my sons knows, but I kept it very light for him.  I'm pretty sure he doesn't know the extent and I plan to keep it that way.  I'm waiting for my youngest son to call now.

LuvRVing

Steph - I totally understand the emotions of "that day" when I had to tell my family.  It's hard to be strong for everyone when you're the one who needs the support!  I chose not to tell my mom - she's 82 and has dementia, so telling her would be nothing but bad.  We all gathered at my daughter's house, had a pity party, then drank away our sorrows.  Now we just deal with the day-to-day and we all know that my parting is not "imminent."  Fortunately, I don't have young children. 

If there is any good news in all this, it is that I really feel fine, I have no symptoms from the lung mets, and I maintain hope each and every day that the cure will come.  I hope you can do the same!  I went to Paris in May and will go to Hawaii in October (refundable plane tickets just in case).  I intend to keep on living every day and I hope you can do that, too!

(((Hugs)))

716bobbiejo

It's been a long time since I've posted here, mostly because I just want to move on.  I see for Steph & Michelle that moving on looks different than it does for some others.  First & foremost, Steph & Michelle, my heart aches for you & your families.  I remember getting the same news about my mom.  Granted I was only 5, & I was given the news in age appropriate language, but nonetheless, I knew what what going on.  Now I look at MY 5 year old, my only child, & I couldn't begin to imagine history repeating itself.

Michelle, you continue to amaze me with your incredible optimism.  Steph, I know we aren't all "wired" like Michelle & reaching that level of positivity isn't our usual demeanor.   My prayer for you is that you will strive to find the positive in every day & remain hopeful.  You will both be in my thoughs & prayers.  I'll continue to follow you on CaringBridge, Steph.

pebee

Oh Stephanie and Michelle..... I am so heart broken for you.  I had hoped that we would have all made it out of this mess together.

My thoughts and prayers - - that is all that I can offer you.

LuvRVing

Thanks, Bobbiejo and Pebee...I am very lucky that I'm wired to be optimistic.  It helps me, my family and all my friends to remain upbeat.  I think I may have mentioned that I had a wonderful woman who worked for me - she was stage IV for 20 years before she was taken by this demon.  Having personal knowledge of someone like her is incredibly helpful.

pebee

I didn't want to mention this - sometimes it is a bit dicey. 

There is a woman that I know who was diagnosed at age 34 with 4 small babies, her youngest was 2.  She had the first round of treatement and then two years later, it came back - stage 4.  She has been on a variety of medications (not sure what or where her metasises are) but her youngest is now 21 and she is still here enjoying her first grandbaby.

May both of you be blessed with this form - long term chronic, but nothing exciting going on.

LuvRVing

Pebee - thank you for telling that story!  I'm early enough in this journey that stories like that give me so much hope!

ssmith37

Thank you, Michelle, Bobbie Jo and Pebee.  It's been a difficult week for us, but we are coming to terms with this and taking things one day at a time.  We have to keep on living like today is our last and enjoy all the time we have together.  I appreciate the stories each of you, Pebee and Michelle, have relayed here about the 20-year stage iv survivors.  That is very comforting and definitely something to hope for.

kks_rd

Just wanted to jump in here to offer warm fuzzies and love to my June gals!

Stephanie, how old are your kids?  I can't imagine what it's like to be in your shoes (or yours, Michelle).  Hope it's OK to follow along via your CaringBridge site.  It's so true that there are many examples of people with stage IV living long, thriving lives.

Like BobbieJo, I haven't lingered on the forum much since completing tx.  Actually it's in part because I'm finding new ways to connect, including being a "Peer Mentor" for newly diagnosed ladies through my local BC organization.  But of course, I'm also trying to find that new normal everyone talked about.... will let you know if I ever do (lol)!

Lots of love- Kat

LuvRVing

Thanks, Kat!  Can you PM me with a bit more information about being a "peer mentor" for new BC gals.  I think I have enough experience to qualify for a volunteer job like that...assuming that I don't scare them off with my Stage IV status!  And I've been thinking about how I'd like to help patients navigate through he mazeof treatment options, insurance, etc.

Southamptonmom

Haven't been here in a while. Michelle and Steph, I can not find the words that express how much I wish that things were different for both of you. I wish I could give you both a real hug.

I have a lot to report, but need time to figure out how to spit it out. My psychiatrist suggested that I come back for support. I'm NED, but my life has been extremely difficult...

Wishing you a ladies peaceful weekend.

LuvRVing

Rose - we're here for you when you're ready...(((hugs)))

kks_rd

Hi Rose, sending you good vibes until you figure out what you want to say...

There wasn't much activity on my end... jsut trying to get on with life, you know... but this week I had the first GYN appt since the week prior to my first chemo. We had a lot to talk about (among other things, I'm still in kind of a pseudo-chemopause), but one key thing was ovarian cancer screening given my BRCA-1+ status.  She said they usually start screening in high risk women at age 35, I'm now 34.  We both feel it's important to do the screening but since my hormones are all wacky, there is a higher risk we might see a false positive.  If anything looks suspicious, the next step is almost always an oopherectomy (there is, for example, no way to biopsy - they just take everything).  The GYN made that sound like a terrible way to go - sudden menopause, depression, heart and bone health risks - she actually said it would be "many times worse than what you've already been through." OK well, however true that may or may not be (like... how exactly would she know? but she's my doc so I'm going to have to trust her a little), I figure not getting screened and dying from ovarian cancer is probably a worse outcome. So I'm scheduled for the Ca-125 and ultrasound in October, and I feel okay with that decision. I was considering an elective ooph after age 40 anyway, and goodness knows kids weren't in the 5-year plan.  However empowered I might feel, I wish I didn't have to make decisions like that at all.  Life as a young survivor, I guess.  Anyway, I'm choosing not to spend much energy thinking about all the what ifs and whys.  I mean... I have the rest of my life to live!  Work is keeping me busy, I'm shopping for a new-to-me car, and will be runninga marathon relay next weekend (on a team of 4 - eacah of us has a leg of 6-7 miles apiece).  Know what I'm sayin??

Thanks for letting me share. I was planning to reach out on BCO sometime this weekend, and see this thread bumped up provided the perfect opportunity.

One last thing...love the hair, Michelle! I need to put another pic up on the Hair thread soon.

All my best to you ladies!!

Beaglesgirl

Kat, I am BRCA+1 positive and last december a week before I finished my rads I had a total hysterectemy. I just couldn't live with the thought of that ticking time bomb living in me. I am 10 years older than you but still young enough ... I wasn't even perimenipausal!! when I was first diagnosed in 3/11 I have to say its no worse than chemopause. I feel nothing different than that. My Onc put me on a bio-identical hormone replacement a low dose and its taken care of the hot flashes and any potential 'dryness' I might. I actually feel like myself again.  Love&Hope!

kks_rd

Laura, thank you so much for your input!  I do think I will go for an ooph whenever the time is right.  Happily, all my screening came back OK this year. 

Love your sign-off.  Love&Hope back to you and all the ladies on this thread!

Beaglesgirl

I am sad to notify the ladies on this thread that our friend Stephanie Smith "ssmith37 " passed away on March 25th. She fought hard, oh so hard trying to make it just a little longer to see the birth of her first grandbaby. Although she wasn't able to make that date- I know that she will be a North star and gaurdian angel to that baby girl for all the years of her life. RIP Stephanie. 

cider8

Such sad news, but thanks for sharing, Laura.

LuvRVing

Yes, very sad news.  She and I were on the same timetable.  I'm lucky to still be in the fight.  Hugs to her family and friends.

pebee

When we were all together for this time and this treatment, she was a great member of this sucky club. 

May perpetual light shine on her O Lord, and may she rest in peace,  Amen.

pebee

And, another update... Michelle - LuvRVing passed away as well. There are several threads in the Stage 4 forum to pass along condolences.

May she rest in peace - gone too soon. She was the heart of this thread.

May perpetual light shine on her O Lord, and the divine angels take her to her final place of rest. May all who knew her are comforted by her memories. May her family find peace, and may some day soon, someone like her not pay the ultimate price for this.

Amen.

Srmill

I started in Sept. 4 A/C every 2 weeks followed by 4 T every 2 weeks. I have 3 A/C down now. It has been different each time so far. The neulasta has bothered me the most. I have bounced back pretty good in the 2nd week on the first 2. Having a harder time after my 3rd. Just wondering if it is down hill from here. The fatigue is becoming noticeable now. I am still working full time and have a 11 and a 4 yr old who are always in need of something. I don't want to slow down. I am worried about the Taxol. Fatigue seems to be a huge part of it and I wonder how it will affect me at work. I'd like to know the experiences others have had with it.

justme1

checking in and this takes my breath away