Hospital stay & Hair Loss...makes for a full week:(
 

HI My Friends~
Meant to post when I got home last Wednesday after a SURPRISE 5 day hospital stay for severe neutropenia (.9 - should be 4-10), severe dehydration, and blood born staff infection. UGH!
I started PHT ~3 weeks ago & the following 10 days were wrought with side effects gone wild. I thought the GI issues were bad, and the rash, but the mouthsores were really really awful, preventing me from eating & drinking.
I woke last Saturday with 102.6 temp and was told by the onc on-call to go straight to ER. So I did. Had no idea it would turn into a 5 day stay, with 2 types of IV antibiotics, twice a day, fluids & virtual isolation. I was so dehydrated that my urine looked like motor oil & my tongue like a dried chicken breast dog treat!
I've dealt with tough side effects many times on this 10.5 yr odyssey, but never so severe that I required hospitalization.
In retrospect, I think we started me on chemo too soon after finishing chest radiation - only waited a week. My poor bone marrow has become so sluggish in the past year and a half, with few breaks from systemic treatment. And on the day that I got my 1st PHT my counts were already so compromised that they had to reduce/adjust the dose so that I could start. My WBC's were only 2.4, so there was only way to go from there but down.
I can't argue with starting the combo because I was anxious to get started and clean up anything disease left over after radiation.
I was dischared after 5 days in hospital with a WBC of only 1.5, but the infection was resolved and all my counts were heading in the right direction they said it was better/safer for me to be at home than surrounded by all the bugs in the hospital.
So I've been very compliant - not going out, drinking lots, washing hands lots. My energy is pretty good, so I wiped down all my counters and cleaned house, but am nervous to go anywhere until I know my counts are WNL.
I'm scheduled for my next cycle of PHT on Thursday, but will ask to delay an extra week to give my counts a chance to really reach WNL. I don't want another dose reduction just so that I can get the treatment. Don't want to set myself up for another hospital stay.

Sadly, my hair - as thin & fine as WBR has left it- started falling out tonight. I'm so sad. This is the 5th time I'll lose my hair, 3rd time since August 2011. It never gets easier for me. You'd think it might, but it just doesn't. I have to remember the process of losing it is so hard, but once it's gone, it's gone and one less thing to worry about.
And if a single person tells me I should by an electric pink wig, or that I can "totally rock the bald look" or "you're so pretty, even without hair." I'm going to SCREAM!
I always try to be more gracious when people say dumb things, but my patience & grace have worn thin.
I'm getting tired my friends...I don't know what I mean by that, but I'm sad tonight and just exhausted by all of it.
Trying to 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;)
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemoJ
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!
10/26/12 – Still NED in the HEAD, but single troublesome node in chest, precariously close
to superior vena cava/heart. Not a perfect scan, but pretty darn good.
Maintain current treatment and Echocardiogram on 11/1 to keep an eye on node.11/1/12 –echo shows normal cardiac function J & node non-threating,
but experiencing symptoms of Superior Vena Cava Syndrome (obstruction/compression)
12/3 - hold cytoxan & methotrexate bc counts too low.
12/13-moved up PET scan due to increased SVC symptoms
12/14 –No more NEDL node progression causing increased SVC symptoms
12/17 – repeat echo & new chest mri for closer look…
Radiation to chest node recommended, change of systemic treatment pending
12/20/12 – 1/10/13 -14 rounds of rads to chest for mass causingSVCS
1/17/2013 – Started Pertuzumab, Herceptin, Taxotere
1/26-1/30 – Surprise hospital stay for severe dehydration, dangerously low counts & blood born staph.

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Hate those BAD "surprises." And I know you missed your dog! Fighting a bad infection is exhausting even when a person has better counts to start with. You did WELL to fend it off.

Just glad that you are sprung and able to do what you can to eat and drink what you like. Mouth sores are the pits. I gather the T is for a taxane, which is hard on hair and palate. Do you have a good mouthwash to help that during the coming treatments?

Hospitals are not generally uplifting, and you will feel happier when it is farther behind you. Hope the weather is nice so you can go out in the fresh air.

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Jessica I am glad that you listened to your oncologist and that you are now back home. I hope you continue to feel better.

PS- I found that 50% benedryl mixed with 50% mylanta helped with my mouth sores. I had tried everything but this last ditch effort really helped.

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Jessica, I'm so sorry your having such a rough time you are in my prayers. You are among the greatest fighters here and no one is above having a bad day. You are home thats where I find the most comfort. May the peace of our Lord be with you today and always.

Gods blessings to you my friend.

Your friend,

Nancy

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Aw, Jessica, I'm so sorry to hear this. Praying you're feeling your old self soon.

- Penny

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Dear Jesica,
I am so sorry to hear all what you are going thru. I gues you and only you knows how this awful side effects feel. I hug you in the distance and send ou all my love. Wish I could be near to help you find confort. Keeping you in my prayers.

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Wow, you have been thru it!! And losing your hair SUCKS!! And the hot flashes make it worse wairing a wig....And I totally relate when people say all those stupid things about rockin the bald look, or how nice a different color, a different style or you have a great shaped head. All those things really do not help because I would prefer a BAD HAIR DAY OR PONY TAIL!!! I am sure you are tired just reading your profile was completely exhausting let along going thru it all. The only way I can get thru a really completely emotionally, mentally, and physically bad day is to tell or remind myself that the next day will be better. You are amazing and must be on the road to the next step!! Because you are pooring out your emotions on this site, and I think that means you are working thru to the next step in the process! Hang tough!!

Re: Hospital stay & Hair Loss...makes for a full week:(
 

very nasty surprise. hope things are clearing up. Did they give you any special mouth wash to help? I know during my chemo so long ago now, they gave me some bicarbonate water to gargle with 6 times a day wonder if that might help you with that problem.
hugs
sarah

Re: Hospital stay & Hair Loss...makes for a full week:(
 

My ONC gave me Miracle Mouth Wash and it worked great!!! It tastes nasty because you swallow it after but it WORKS!

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Jessica,
I understand where you are coming from. Totally. But you will forge on, look at your signature, or better yet, don't! I'm always of the belief that something is right around the corner, so let's keep peeking...
Love you
Karen

Re: Hospital stay & Hair Loss...makes for a full week:(
 

I am so sorry about your hair - I lost mine twice and really grieved over the second time. I do not know how you have managed over 10 years of the constant struggles. You are in everyone's prayers that soon Life will lighten up on you.

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Dear Jessica,

I am so sorry to hear about all that you have been through. I am glad you are home and resting. You have been so supportive of us here. I hope that you hear/read the support from us and know you are cared about. Take good care of yourself.

Jackie

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Im so sorry to hear of your trip to the hospital. You just haven't caught a break with this line of treatment. Im so sorry you lost your hair again as well. I, also, just lost all mine with the whole brain radiation. It actually bothered me more than the first time I lost it. The Ulcerease is still the best thing I have found for the mouth sores. If you use it before a meal, it does help numb it up so you can at least get something down. Hope you are feeling much better soon. ((hugs))

Re: Hospital stay & Hair Loss...makes for a full week:(
 

I hear ya...

Take care, brave soldier...

We are marching alongside you ...

(Ask your doctor to prescribe the 'magic' mouth wash http://www.ehow.com/about_5195046_ma...used-for_.html

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Jessica,
You've been on my mind a lot lately. Thank you so much for letting us know how you are.

I'm so sorry for all you've been through in your latest battles.
Losing your beautiful hair...AGAIN. Really?
Neutropenia and Staph AT THE SAME TIME? Seriously?

It's simply not fair that some of us just can't seem to catch a break. Rest assured that I'll be having some rather heated discussions with the Lord on your behalf, my friend. It's just one damn thing after another. Can't we fit a break in occasionally? I'm really struggling to believe that all the crap some of us are faced with is part of a grand plan.

And...I know people who make comments about "how good we look" mean well.
Of that I have no doubt.
But seriously...at this point we stage IV ladies are fighting for our lives...every minute of every day. I don't know about you, but I don't need to hear how "great" I look.
I don't look great.
I know it, they know it.

Again, I KNOW they mean well... but, here's a thought... maybe some of those Pink-tober Awareness millions could be devoted to making the public "aware" of what's okay to say to people fighting cancer, and what is perhaps not such a good idea.

Or maybe some of those millions could go toward making the public "aware" what kinds of help are actually helpful to people struggling with cancer-related illness. (like maybe cleaning and disinfecting your counters for you...so you don't have to risk touching germs)

Okay, my rant is over. Sorry Jessica. Your struggle just made me sooo angry when I read about it...I hope you read my post the way it's intended...with love and in solidarity.

Sending you all the healing energy I can focus your way.
Denise
PS - IMHO you have every right to mourn the loss of your hair. It's not vain, or silly. It's part of your identity, and a symbol of wellness...it doesn't fall out when things are going well. So, I mourn it with you.

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Jessica - well this just sucks. You are a courageous woman and have faced such tough . I hope your mouth sores will heal soon and your WBC will come back to normal. Keep your chin up. You are in my thoughts for strength and healing. Pam

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Thank you my friends, for your kindness, compassion, prayers, encouragement and even more so your passion and fire, during a time that I'm feeling so vulnerable and scared. And even a little hopeless.
I feel well, but this hospitalization and how fragile my health was has really frightened me.
Waiting to hear back from my doc about how we'll proceed with this combo - an extra week to give my body/counts to normalize? neupogen?
I just don't know & the not knowing leaves me feeling helpless.
We'll know soon enough and will keep you posted~

I don't know what I would do with out you, my sisters.

Keeping the Faith

Jessica

Re: Hospital stay & Hair Loss...makes for a full week:(
 

You are a true warrior. I don't post a lot, but I do keep up with updates. I want to let you know that I am praying for you every step of the way. I'm sorry you are going through all of this and I'm sorry you are losing your hair yet again....I can't imagine what you are feeling....but I want you to know I am thinking about you. Stay strong. Sandra

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Boy Jess- what a week. It sounds like you have been through the wringer and I am so sorry. We are all beside you and keeping the faith that things will get easier. Don't forget that we are here and are always thinking of you and wanting the very best for you. Stay strong even thought it is often a struggle to do so. You are one of the strongest gals around.

Re: Hospital stay & Hair Loss...makes for a full week:(
 

Dear Jessica,
I have been thinking of you and while not pleased by the news of surprise challenges you amaze me with your fight!!

Your thoughts about waiting a week to physically and emotionally recharge sounds like a solid plan. We are so programmed to push and push to beat back this disease. Sometimes we just need a break.

I too ended up in the hospital with a blood infection and IV antibiotics while on taxotere. I remember going to the bathroom and seeing my bald head in the mirror and all of the IV gear and just breaking down. So, please know that others share the pain of hair loss and the grief that this journey brings. You are not alone!!!

Thinking of you frequently....Lori