Checking in!

[Kmswilson]

It's been a while since I've posted, so I just wanted to check in. My one-year anniversary of initial diagnosis and subsequent stage IV diagnosis a few days later just passed in January. My onc said other than losing my hair and a few pounds, I look exactly the same, so that's a good thing!

At the beginning of December, my scans showed significant progression in my liver again, so the Navelbine/Herceptin combo was being outsmarted by this damn cancer again. I started AC on 12/5, and I've had three cycles and just had scans on 1/30. I'll get the results this coming Monday (2/6). My liver enzymes have dropped down into normal, and my ca 27/29 went from 292 to 159 a couple of weeks before scans, so I'm optimistic that scans will show regression! I'm also feeling much better. Less nausea, more appetite and energy.

In the last week, I have had some pains on my right side and some nausea, which in the past have indicated my liver mets are "acting up", but I'm praying the cancer is just being beat up in there! In the past, I've had no appetite, too, but so far I'm still eating pretty well!

The AC is really rough for a full seven days. But, on the 8th day, I feel the fog lift and I've been able to enjoy the second and third week of each cycle for the most part (except for being stuck in the house during week two because of my counts)!

Anyway, I never asked (because I haven't wanted to know statistics, they are not ME, they are averages, etc.), so I don't really know my initial prognosis, but I know by the tones of my surgeon and onc that it wasn't good. However, I'm still here 13 months later, which feels great. And I plan to be here for a good, long time yet! This site is a blessing. It educates, it provides empathy and compassion, it supports, and it really is a God-send. I'm so appreciative of finding it and all of you who post on here. Much love and prayers to all who need them!

[Mtngrl]

Krissi--

Thanks for checking in. I agree that still being alive and kicking a year after a stage iv diagnosis is a big deal. Good for you.

I'll keep my fingers crossed for your scan results Monday.

[karen z]

Hi Krissi,
Thanks for checking in and it sounds like you are on something that will help. Boy, I know that AC is not the easiest. I always felt so much better after week 1. I could totally predict what my chemo "life" was going to be like by the second run through. Anyway, stay strong like the gal you are !! And give us some regular check-ins!

[Kmswilson]

Thank you to those who responded and those who read. My news from scans last Monday was mixed. The AC knocked the liver mets back a little bit, and it kept the rest of the bone mets and breast tumor stable, but I now have brain mets. When I met with my onc before last scans, I mentioned that I'd had some mild headaches, blurry vision (but i always corrected and was mostly after reading on my phone or ipad). He suggested we go ahead and run a brain MRI since it had been a year, though he really thought these were just side effects of over a year of chemo. So it was really kind of a shocker. They found 9 lesions, and they said most are tiny, caught very early. The largest is about 7 mm. When I met with the radiation oncologist, he said some were so small he had troubles finding all nine, so I guess if I have to get them, that's good news. He also said they were too small to be causing any symptoms, and had I presented the same symptoms I did to my onc to him, he would never have thought they were caused by brain mets. Thank the Lord I have an oncologist who always seems to be a step ahead of whatever I'm facing. So on Monday, I started whole brain radiation. Can't do directed because they are spread all over, not located near one another. I've stopped chemo and will have a total of 13 rads, I've had 5 already. When that's done, I'll be starting on Lapatinib and Xeloda. I'm optimistic that the rads will do their job, and I'm hopeful my liver doesn't spin too out of control while I'm on this break so I can get back to killing those mets with chemo. My liver is prett chock-full! :-) So anyway, that's my story. Not exactly what I was prepared for or hoping for, but this journey rarely is, I'm learning! Best we can do is meet each challenge head-on and beat the crap out of it!!!!

[caya]

Good luck with all your treatments Krissi... out out damned spots!!

all the best
caya

[Paty]

Krissi,
I am so sorry to hear about your brain mets, i hope you are not having many side effects with the wbr. Some of our members have got wbr and you can probably exchange information with them. Please keep us posted and let us know how you feel. I will be praying for you and let me send you a hug full of good wishes. God bless you.

[Kmswilson]

Thank you all so much. So far, I've had nine zaps to the old brain, and I have four more to go. The steroids are driving me nutty between starving all the time and not being able to sleep at all. And I am really, really, really tired. Today my brain just feels scrambled and fuzzy. But this, too, shall pass, and then I can hopefully get kicking again on new chemo...Lapatinib and Xeloda for me next!

[jml]

Hi Krissi~
Sounds like you and I are walking parallel paths...
I was also dx'd Stage IV @primary dx, with liver mets, and have ridden this rollercoaster through it's terrifying highs & lows and even managed some calm periods of the "new" normal.
I just want to encourage you to keep the faith, stay positive as you are, turn to us here for knowledge, encouragement and a soft place to fall.
I'm coming up on my 10th year with this Stage IV disease, as are a handful of our amazing sisters here. And while it sounds so daunting - a DECADE - I often find myself in awe of the incredible resilience and wisdom of the human body & spirit.
I've just completed 15 rounds of WBR for 8 spots found in my brain - 8 weeks prior I had an MRI that showed one 2mm spot, but the subsequent follow up MRI shocked us with 8 spots - 2 larger ones in my brain stem & R temporal lobe, then the others tiny.
I feel like I tolerated the treatment well, but it's hard to know if I feel so off-kilter because of the zaps or the decadron. I'm starting a 15 day weaning schedule off the decadron and am looking forward to these side effects going away - the constant fixation on food, the blurry vision, the irritability & edginess, and this weird combo of feeling tired but jittery. Oh and the chubby cheek moon face. I just don't feel like myself or look myself and I'll be glad when I start feeling normal and focused and motivated again.
I hope you get through these last WBR zaps without any further complications and that when you resume the AC that it continues to knock back and hold stable any other systemic stuff going on.
Hang in there & Keep the Faith!

Jessica
Dx-5/17/02 - 33 yo; Stage IV
L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR

[Kmswilson]

Thank you so much, Jessica. I've been following your journey since last week when I did a search on WBR and found your thread. You are inspiring me and keeping me hopeful! Ten years is amazing. I've been saying since day one if I can just keep plugging along and dancing with this crap (save for a miracle) for years, then maybe I will make it to the day we see a cure. I have a 5-1/2 year old and an almost 3-year-old who need me to fight like mad for them, so dance I will! Wishing you much luck, blessings and success with the next MRI, weaning off these steroids, and all you are fighting! And thank you again for sharing your story and giving me such hope.

[Mtngrl]

Good luck and prayers to Krissi and Jessica.

I agree, Decadron sucks. No one warned me it would make me mean and snappish. And the moon-face! Yuck.

You are both an inspiration to me. Hang in there.

[Pray]

Thank you Krissi and Jessica, I appreciate your posts! Krissi your fight has not been as long as Jessicas,We would never know by your equal positive fighting attitudes. You leave me in Awe! Gods blessings to you both!