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I'll have to do the ****** chemo again.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

There are three areas of concern in my body right now.

First, the local recurrence...a lump at the mastectomy scar. (It became 3 lumps between biopsy and surgery.) Had surgery Tuesday to get them out, and no nice neat steri strips this time. I have seven big black ugly stitches. Still waiting for full pathology on that, but the biopsy at that site showed cancer consistent with my original dx. I'm hoping I'll get clean margins here.

Second, mystery spot on the liver...it shows up on the CT scan but not on the pet scan. Based on everything else going on, I'm not willing to leave that a mystery. I'm gonna find a way to solve that little mystery...more scans, biopsy, have them remove the whole damned spot if I can.

Third, two lymph nodes near my left lung. I got final pathology on that biopsy today, yep it's cancer...and yep, it's consistent with the original dx. My onc is on vacation right now, so I spoke with another one...she says no surgical removal because the lymph nodes are in a location "that is too difficult to get to." It seems to me that if we can get to the lymph nodes to do a biopsy, then we can damned well get to them and take them out. So I'm asking for a consult with a thoracic(sp?) surgeon. Regardless, I will need chemo again because the cancer is in the lymph system. (And because it's in the lymph system, no lymphedema massage for me right now.)

I will have to wait at least two, maybe three weeks before starting chemo again. We need to allow healing from the surgery before we start killing cells again. The big advantage to waiting is that it will give me time to research my onc's recommendation and look at some clinical trials too. The scary part about waiting is how quickly IBC moves.

This is where I start either crying or cursing, depending on my mood pendulum...

Thank you all for caring so deeply and for listening so well.

Hugs,

Linda

natly15's picture
natly15
Posts: 1930
Joined: Sep 2009

Linda I'm so sorry you have to deal with more of this, but you are on top of it and I have great confidence that you can kick this IBC to the curb. Prayers and many hugs.

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

Lord, be with Linda as she goes through this difficult time. She has been through enough already. Please strengthen her for the fight ahead. We ask all of this in Jesus name. Amen.

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Linda, I'm sorry you, too, have to deal with this recurrence. Your situation sounds somewhat similar to mine with the exception that I am IDC.

My 2nd recurrence was also on the scar line and by the time it was dx it had spread to my liver. Now, it took 2 liver biopies to confirm that, but yes, there was a very small tumor there. I had the option and recommendation from my onc (Mayo Clinic) to participate in a clinical trial. The one he was suggesting just didn't seem like a good fit for me. It was a stage 1 trial meaning that it was in the testing stage for the safety and effectiveness of the combined drugs. I guess I am a more traditional person and I opted for recommendation #2 and that was IV chemo. I am taking Abraxane every 3 weeks and have had 2 treatments so far. I have noticed that the "lump" on my breast is no longer there. It had become quite large in the 2 months I went through all the tests at Mayo. The worst side effect from this chemo is that I have lost all my hair. That happened, just like last time, on day 14 after the first treatment. All in all, I feel lucky that I am not experiencing more severe side effects. Now, the Nuelasta shot is another story. I experience the bone pain for 3-4 days but I am able to control it with Extra Strength Tylenol. I feel I am lucky!

We are all different and I know that you will make the choice that is the best for YOU. I am here for you and will help in anyway I can. Take care and together we'll kick it's ass!!

Love and (((hugs))),
Debbie

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Debbie thank you for the encouragement. Please talk with your onc about claritin (not claratin D) for the Neulasta bone pain. I know it sounds like it should have no effect, but it is recommended by the manufacturer. (The pharmacist can confirm this.) The claritin made a huge difference for me when I had the neupogin injections (a cousin to neulasta).

disneyfan2008
Posts: 5257
Joined: Oct 2010

Thinking of you..

Denise

butterflylvr's picture
butterflylvr
Posts: 943
Joined: Apr 2011

Oh my gosh Linda.. I am so sorry. You know what ever the journey you will have a lot of pinks on your side of the ring. My heart goes out to you as you are left to mull over this devastating news. Time to get your game on... I've got my gloves already on for you.

Hugs,
Lorrie

skipper54's picture
skipper54
Posts: 936
Joined: Feb 2011

And prayers are coming your way. Really had hoped not to read this kind of news but you have an attack plan. We're in your corner, you know that. All the pink boxing gloves are ready for the fight.

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

Praying for you Linda.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Thank you all for being in my corner.

Hugs,

Linda

gami43
Posts: 281
Joined: Jul 2011

Linda - I am sad that you are having to face this
beast once again. My thoughts and prayers will be
with you for this new battle. I wish you strength
and courage for the fight; and, of course our hope in
the Lord. Fight like a girl, Linda!
Sending you a big tight hug.

Luv, Teresa

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Linda, I am sending you prayers, positive thoughts and cyber hugs!

Hugs, Kylez

mwallace1325's picture
mwallace1325
Posts: 806
Joined: Apr 2009

Linda, I'm so very sorry that you're going thru this again. Great that you're so determined to find the solutions that you want, not just what you're told. Please continue to use the time to heal cause the stronger you are, the harder you'll be able to fight.

Cursing, crying, venting of any kind accepted here.

Praying and sending angels to surround you and your family.

marge

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

Linda,
Curse and cry all you need to. Cancer sucks. While you are fighting this just remember we are all in your corner.
Cindy

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

I understand your frustration about not being able to surgically remove the spots near your lung--and I'm glad you have a little time to research and maybe see another doctor about this. Maybe this is not the final word on this.

As far as more chemo--that really does suck as well. But, try to consider it yet another weapon to destroy this beast once and for all. I know that's easy to say, but from what I've read on all your posts, you are one strong, determined woman and you can and will do this.

Please keep posting--we are all here for you--every single day.

Hugs, Renee

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1650
Joined: Jan 2011

Linda -- I'm so sorry to read this!! I just read Cynthia's great news, and I'm praying that you too experience another miracle. We all know how hard, annoying, discouraging things can get, but remember we're here to listen. And remember you're in our prayers. And also remember to keep your faith no matter what you see. No matter what you hear.

I can't imagine the emotions you're experiencing. But this shall pass too. It's good you're being proactive. You should always listen to your inner voice.

I'll be doing a special prayer for you tonight.

Stay strong and positive sister. Believe.

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

Oh Linda, I am so sorry to hear this! Please pm me if I can do anything at all my friend. I am praying for you and know that, if anyone can fight this, it is you. Your strength and beauty shine through every post. ((((Hugs)))

Lighthouse_7's picture
Lighthouse_7
Posts: 1566
Joined: Jan 2010

Linda,
Sending hugs and love your way. I'm so sorry this has happened to you. After the initial shock fades a little, you can fight like a girl and beat this d**m disease.
All my best,
Hugs,
Wanda

Kat11's picture
Kat11
Posts: 1931
Joined: May 2009

So sorry you have to go through this again. Just do what you have to do to get rid of it. You know were here for ya.

Mitzi333's picture
Mitzi333
Posts: 511
Joined: Feb 2011

What a bummer!!! So sorry to hear this news. You are in my thoughts and prayers that this round of chemo WILL care of the Beast!!! Please keep the faith that God will see you through this stage of the journey.

We're all praying and sending positive vibes your way!!!

Hugs~
Mitzi

Mitzi333's picture
Mitzi333
Posts: 511
Joined: Feb 2011

Sorry

Linedancer54's picture
Linedancer54
Posts: 18
Joined: Jul 2011

So sorry Linda for you having to go through all this again. It's bad enough to have to do it once. It certainly isn't fair to deal with with this horrible disease again. Prayers and hugs as you wait to find out what to do!

Sandy

GreeneyedGirl's picture
GreeneyedGirl
Posts: 1001
Joined: Sep 2008

I truly hope you will have clear margins with pathology~ U have hardly had time to catch your breath thru all this. I certainly feel your tears and anger. I think most all of us have had those moments washing over us time and again~ like you said however the mood pendulum swings~

~as for those ugly black sutures...I called mine "Franken~tittie" cuz those babies are ugly to look at.

Thinking of you, and praying for peace as you wait~
~Melanie

aisling8's picture
aisling8
Posts: 1245
Joined: Feb 2010

all my best energy your way. I'm really sorry about this news.

xo
Victoria

survivorbc09
Posts: 4378
Joined: Jun 2009

I am so sorry Linda that you have to have chemo again. This just isn't right. I will be praying for you.

Hugs, Jan

survivorbc09
Posts: 4378
Joined: Jun 2009

double post

smalldoggroomer's picture
smalldoggroomer
Posts: 1181
Joined: May 2010

Linda, I am so sorry to hear that you have to go through this all over again. Your in my prayers sweetheart. I wish I could say some thing to make you feel better. You know you can always come here and scream, cry, yell what every helps at the moment. We are all here for you We love you and will always be here for you. Sending strength and HUGS your way. Take care darlin Kay, Prayers Going Up right now.

epark's picture
epark
Posts: 338
Joined: Aug 2011

i just wanted you to know you are in my prayers and thoughts....you are always so positive that i know you will get through this.....

Hugs
Eva

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

So sorry Linda that this has happened to you. I will be praying for you and I'm sending you big hugs now also.

Hugs, Angie

RozHopkins
Posts: 444
Joined: Dec 2010

Good luck to you Linda. Can I ask how long ago you had surgery? After surgery everything appears good for a while and then lumps and bumps appear all over the place it seems to me.

Ladies like yourself give me strength, I wish you well. XX

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

when I read your post I was so hoping that I could wave a magic wand and make it all just go away, but, I know I can't. Words can't express how sorry I am to read this news.

I also said a few f*#@ too. This disease needs to be kicked off the face of the earth!

I will be here for you Linda, holding your hand, holding you up, or, just reading your posts and writing back something positive, or, just letting you know that I am thinking of you.

Please do keep updating us to let us know what is going on with you and your treatment.

I am sending big hugs, big prayers and loads of love!

Sue :)

Chickadee1955's picture
Chickadee1955
Posts: 333
Joined: Apr 2010

Linda,
Please contact me if there is anything at all I can do. I'm just a few minutes away. You are in my daily prayers; I wake up with prayers for you on my lips. Be strong.
Chickadee

dbhadra's picture
dbhadra
Posts: 344
Joined: Jan 2011

that you have to do the *&^() chemo again! That sucks.

When I got back my pathology report with all the positive lymph nodes and was told "yep, more chemo" believe me (well, you all heard me here on the board) I screamed and cursed and cried for a month. I was DONE with chemo and didn;t want any more! Jump forward two months - I'm now at the end of the 5 weeks of 3000 mg Xeloda along with the radiation and have not had ANY side effects at all. So, the chemo I was absolutely dreading turned out to be not so bad. And I am praying that your next chemo will also be side effect free but at the same time kick the cancer's butt.

Yes, about the lymph nodes - if they can biopsy them, why can;t they take them out? I don;t get that either. I do know Nancy (MAJW) had a similar lymph node situation which were treated with radiation and Xeloda rather than surgery.

Wishing you the best and please PM me if you want.

Laura

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Chickadee, It means a lot that you would do this for me...thank you.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Roz, I had a bilateral mastectomy (no reconstruction) in January of this year. Then the new little lumps and bumps were removed this past Tuesday.

sinee's picture
sinee
Posts: 197
Joined: May 2011

Show us the way~how can we be supportive to you right now~you know we are all praying already, but what else can we do? Here is my shoulder, if you need a good cry, here is my hand to hold, here is my fist, to pound with yours, here is my heart to hold you up when you feel to scared to think. You will get what you have given to all of us. Lots of love and support, courage and strength, wisdom and faith, peace and knowings...we will cry with you, hold you, curse with you (that's the best part) hehehe, scream to the top of our lungs, share our ice cream and baked potatoes while you are going through chemo again. And the knowledge that you will be victorious once again~ Sinee

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Thank you all for the support and encouragement. You all mean so much to me...it makes it more powerful that you all gather and send your strength to me.

CC and Dbhadra, I will send those pm's when I need a special boost.

Hugs,

Linda

New Flower
Posts: 3914
Joined: Aug 2009

Linda,
I am very sorry . just when you have started feeling better and getting back to normal, the ***** strikes again.
Please know that you are always in my thoughts and prayers.
As far as research goes, you probably need different Chemo drugs than you were treated first time. I hope your oncologist and you will find effective treatment with minimal side effects.
Hugs
New Flower

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I'm sorry too Linda that you have to do chemo again. I was so praying for better news. We are all here to support you however you may need us.

Hugs, Leeza

jewels5's picture
jewels5
Posts: 57
Joined: Apr 2011

Linda,

I am so sorry to hear you have to go through this. You are in my prayers. Stay strong, you will beat this!

Hugs,

Julie

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

So sorry Linda You be sure and PM me too if you need anything. I'm supporting you and praying with the other pink sisters for you.

Noel

mollyz's picture
mollyz
Posts: 737
Joined: Sep 2010

Linda,I'm so sorry you have to go through this again,ask God for a healing of your body,we can pray for you but you have to ask him also we love you on this board and i for one respected your opinion when i was going through so i know you'll make the right decision.How are the kids? keep us posted! MOLLYZ

camul's picture
camul
Posts: 2003
Joined: Dec 2010

So sorry u are doing this again... sending prayers and positive thoughts. I too am surprised that they can get to the lymph nodes to biopsy, but not to remove? I am sure they have their reasons, but I have wondered this before with others.

Will continue to send prayers and positive thoughts for you and your family.

Carol

VickiSam's picture
VickiSam
Posts: 8219
Joined: Aug 2009

and that the beast has reared its ugly head in your direction.

I have faith and hope that you will accomplish your goal of gaining remission, again -- and winning yet another battle with the beast. You have a solid game plan in action with solid and positive professionals, Sisters in PINK and family members to cheer you on.

Continued prayers and positive thoughts coming your way.

Strength, Courage and Hope.

Vicki Sam

VickiSam's picture
VickiSam
Posts: 8219
Joined: Aug 2009

I am so upset .. about your situation .. my post went viral ...

VickiSam's picture
VickiSam
Posts: 8219
Joined: Aug 2009

....

VickiSam's picture
VickiSam
Posts: 8219
Joined: Aug 2009

....

VickiSam's picture
VickiSam
Posts: 8219
Joined: Aug 2009

darn computer and its many buttons!

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

I wish I could wrap my arms around you right now to console you and to tell you that everything will be fine. I know this is a horrible blow to you Linda, and for that, I am so very sorry.

If you need someone to lean on ever, just let me know, and, I am here for you.

Wishing you the best with chemo with no side effects. You can do this and you will WIN!

BIG HUGS!

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

Hi,

When a disease is systemic they don't usually do surgery. Treatment is taking care of the problem by either Chemotherapy, Hormonal therapy or radiation.

They don't need to slash you to remove the malignancy at this point. I had tumors all over both lungs and lining. The thoracic surgeon did a VATS (video assisted thoracic surgery) for a biopsy and removed enough samples of the tumors in order to know what kind of therapy to prescribe.

In my case my tumors were 90% estrogen and I went on hormonal therapy. The first one didn't work well, arrested growth but ... then progressed. The second therapy was great, more than 85% of the tumors to a hike for around 22 months. Then those that didn't disappeared grew again and some returned. That's the game.

If the PET scan showed cancer elsewhere and not in the liver, more than likely your liver spot is probably not cancer. I once had a couple spots found on a ct scan that turned out to be cysts. There are other things that come and go on parts that we would never know about unless we have some sort of scan.

Since you are doing chemotherapy, that should take care of all your concerns on cancer. Your concerns are being taken care systemically. You don't want to be "over scan, and over biopsy" with needless surgery. No good doctor would recommend that you go that route.

Best wishes,

Doris

debi.18's picture
debi.18
Posts: 847
Joined: Jun 2011

I'm so sorry. More prayers and hugs headed your way. Keep that wonderful attitude of yours and kick this beast's #@!. We all here for you and love ya!

Extra hugs,
Debi

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