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cg--- View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Nov 23 2010 at 11:44pm
 
I want everyone to know how deeply I missed my forum family....but it is very difficult to type when you are hanging on by the tips of your fingers as you fight for your life at the edge of that cliff that seemed to appear when we  first hear those fateful words.  The drop gets steeper and you dig your fingertips even deeper when you hear the words metastatic stage IV.
 
I have learned many things since March when I was first diagnosed with lung mets.  One of the first things I learned is that angels walk among us, some wear stethoscopes, some wear yamulkas, some are sisters of my heart, but the one thing that set them apart from all others is their unconditional love, support, and single-minded focus....to love and care for me by all the tools and skills they possessed, and it is for that reason I am so grateful to have improved so tremendously by having them in my life.
 
Stage IV is rather an interesting condition, (I prefer to be stage IIB remedial).  The original chemo obviously did not get the lesson of shutting down those tumor cells, and now stage IV chemo must  hunt them down and eliminate them without destroying the host organs (or me).  (Not as easy as it sounds). This is where being in top physical condition is so important....although my first comment to my oncologist when my recurrence was detected happened to be "Low-fat cookbooks - real cheap!!) The healthy eating and exercising had me in the best shape of my life for the biggest battle of my life.
 
While moving into the land of neverending appointments, changing appearance, compromised physical abilities, we have the debate of terminal versus chronic disease.  Sometimes clues are given by your healthcare system without even asking a question.  I will never forget the first visit from the home care nurse and her 'pile of papers', to 'just sign because they are standard'.  Well, the first page was a DNR (complete with my very own number registered with the Province of Ontario).  I explained to the nurse that rumors of my death had been greatly exaggerated and I would not be needing another number attached to my name for a long time.  They would come visit and felt worse for having seen them.  Finally, 'The Doom and Gloom Society' stopped visiting (at my request) and I do not miss the phrase "when I could no longer".  Somehow, palliative terminal care seemed like a foreign protocol from a country I had no intention of visiting for a long, long time.
 
We may be joined by a common condition described as triple negative breast cancer....but our cancer is the most heterogeneous group you could imagine. It seems that all the 'should work' chemotherapy proved untrue in my case...My condition was quite serious in March when I started on an investigational anti-VGF plus Taxotere...only to have it stop working on cycle 5....on to the next apparent tumor stopper for triple negative - Cisplatin/Gemzar (twith these agents my tumors grew and spread), then onto Xeloda (like fertilizer the tumors started setting up residence throughout my body not only both lungs,  the lymph nodes, mediastinal, supramammary, inguinal, axillary.  My left side had shifted across the midline into the right side of my chest.  My legs had swollen like tree trunks and I did not have a 'well turned ankle' any more.  My left lung had collapsed, my oxygen saturations had dropped to 86% and a wheelchair was needed for mobility, but throughout this I had my resolve intact buoyed by the continuous support, and help from the best authorities around some with medical degrees and others with life experience.  
 
Fast forward to my current chemotherapy du jour, Abraxane.  So far it is working. But, for the first time in my chemotherapy career my absolute neutrophil count was too low for me to have chemotherapy on Monday.  This was a blow to my feeling hopeful condition and with any luck my count will recover quickly.  Abraxane weekly for 3 weeks and then 1 week off.  No Neupogen support yet.
 
Please know how much your caring and support has meant to me.  
 
With heartfelt gratitude,
 
Connie
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Donna Z View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Z Quote  Post ReplyReply Direct Link To This Post Posted: Nov 24 2010 at 12:51am
dear dear Connie. It is so wonderful to read your post.

It is heartfelt gratitude to you that I owe for being there when I was first diagnosed. Your cyber hand was a blessing on many dark and lonely nights.

luv donna
Dx 03/09 TN, Stg 2a, gr 3, 1.7 cm Taxol X 12, FAC X 4, segmental mastec Sept 10/09,
1 pos/29, from Canada, Treatment MDAnderson, rads X 30 started Oct 29/09. Zometa start Nov 24/09
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 24 2010 at 7:42am
Connie,

Your support when I was first diagnosed will always be remembered.  You were one of the first to offer a welcoming hand and I'll always be grateful.  I'm so glad to see you sharing your journey once again.  We love and miss you.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: Nov 24 2010 at 8:08am
Oh Connie...so glad to hear from you.  I am sorry you have been through so much.  My prayers have been and will continue to be with you.  Your strength and grace is such an inspiration to us all. 
 
XOXO
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 24 2010 at 11:13am
Connie, wow I'm so happy to hear from you!   I have missed you tremendously, dear friend.   It sounds like you have indeed been in the fight of your life, with every fingernail put to good use in holding on physically, emotionally, and spiritually.    The gratitude coupled to suffering comes through loud and clear in your 'voice'.  So many good people caring for you, and so much struggle.  I'm so glad Abraxane is working for you. It makes sense that it could be a drug related to one of the ones from your original treatment, as your recurrence was 'late' on the TNBC timescale.  (that implies either lazy cancer or sensitivity to one of the drugs you had).   I think about you all the time, and wish you complete healing.
Much love,
Denise

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 24 2010 at 12:23pm
Connie,  thank you so much for posting... I miss you... my prayers are with you, you mean so much to so many... I hope you feel the hugs... Love autumn
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 24 2010 at 3:24pm
Dear Connie,
 
I guess among other talents of  yours is the ability to read minds....I just put a note in the mail to you asking the same question you answered here. Thank you so much for posting and letting us share in this battle with you.
Love,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 26 2010 at 10:18am
Connie, we all think about you constantly, love and miss you...it's so good to hear from you!
 
You've always been so wise, witty, funny, reaching out to others, it just breaks my heart that you've had to go thru all of this and pray things will soon get better..you are a ray of sunshine to my day..we are with ya honey..Hug
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debris Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2010 at 1:36pm
Connie,
 
Sending healing thoughts and prayers your way!
 
God Bless.
 
Deborah.
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusanE1104 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2010 at 2:51pm
Connie,  I'm sorry I don't remember you from earlier.  I'm on and off the boards depending how much time and energy my own battle is taking.  But I wanted to commend you on your courage and strength.  You've been through so much, and I'm glad you're back here posting.  I have my fingers and toes crossed for you latest treatment success.
susan
Susan 62 1987 Stage 1   1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin
8/09 NED
12/09 liver mets Taxol/Avastin
4/10 liver mets
11/22 Parp Car/gem
parp failed
2/2011 Ixempra
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Post Options Post Options   Thanks (0) Thanks(0)   Quote diane1234 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2010 at 11:48pm

Connie....can I just say I am in AWWW of you. I too was a stage IIB....I was BARELY out of treatment when the beast reared its ugly head. I did my last radiation treatment February 5th, 2010. I made it about 10 weeks and started experiencing GREAT pain in my shoulder blade. After a call to my Oncologist (back home) (Arkansas). I was told to STOP acting like a cancer patient and that I AM Cancer free and what she believed I was dealing with was Phsycological. UMMMM NO I said...0h no..I REALLLLLYYYYY do feel this pain. Then was told....(WELL if it makes u feel better we will do scans) The answer I gave was YES I want scans.......

The next day there was an opening....OFF TO SCANS I WENT.....
 
The day after that received a phone call from the Onc. Nurse who just two days prior had told me the above statements. The NEW statements were I AM SO SO SO SO SORRY!!!!! I was told that a mass had lit up in my mammary nodes and that there was a large mass in the mediatinal area. I was then told by her that she would have BET HER HOUSE I WAS CANCER FREE.....
 
Fast Forward three weeks, I am in Chicago at CTCA....More scans done and HELLO two lesions in the liver lit up. BOY OH BOY....This all happened June. I was OFFICIALLY DX with metastatic disease May 2010. Even though I KNOW it was there April.
 
April 2009 was my original DX of stage IIB triple negative....
April 2010 it was BACK....or did it ever really go away???????
 
Like you connie it was on the move. I had Pleural Effusion.....SEVERAL LITERS WHERE DRAINED AND I went home with a tubing system in my pleural area so my hubby could keep the fluid under control at home.....WOW I WAS BREATHING AGAIN!!!!!
 
Then we get to August...OOOOPPPS......thought I was having a heart attack. The pain was so intense and I COULD NOT BREATH. The pain brought me to my knees. The verdict Pulminary embolism in both lungs. (Blood Clots)
 
That earned me a six day and night stay at CTCA.....Once again I SURVIVED.....
 
I sit here typing from Chicago. Scans were done a month ago....NED......We came back for more scans and the verdict STILL NED!!!!!
 
WOW....would have NEVER EVER believed several months ago when things were spiralling out of control that would be possible.
 
My counts (platelets) are horribly low......Hubby n I spent a lot of time with the Dr. today. The decision was made....CHEMO BREAK....I am to go home and LIVE.....enjoy xmas with my children and come back in 6 weeks and we will do pet scan....
 
She knows my body is tired....She knows it needs to heal. It has been NON stop Surgeries, Chemo, Radiation, and complications since April 2009....
 
I have had 3 surgeries, 24 chemo treatments, 32 radiation treatments.....now we take a little CHEMO BREAK....
I am SCARED to do that, but I want my body to be strong enough to continue on if and when it rears its ugly head again. All tumor markers look good. I am 10 points from NORMAL RANGE.
 
We did do a circulating tumor test today. I get those results tomorrow.....oh me what a Journey we have been on....
 
XOXOXOXOXO,
Diane
dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2010 at 12:06am
Diane,

What's involved with getting a circulating tumor test? Are there qualifications? How accurate is it?

Glad you're getting a break so you can heal and get stronger.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2010 at 12:50am
Dear Connie,

what a beautiful post...

in your corner, always,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote abcmom Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2010 at 12:31pm
Diane-

Oh my gosh, you have been through it.  That is incredible.  I so wish these doctors and nurses would just understand that we are not statistics and just check us more as we wish because of the nature of our beast!
Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice)
Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 02 2010 at 7:34am
Dear Diane,

wishing you a lovely, joyful holiday break with your family...

Dear Connie,

you can add Dr. James Ingle at Mayo Clinic, Rochester MN. to your list of outstanding Breast Medical Oncologists. Home today.

hope you are doing o.k.
..............

You are both in my prayers,

Steve




Edited by steve - Dec 02 2010 at 7:34am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Dec 02 2010 at 11:06am
Diane, congratulations on maintaining NED.  That is so wonderful - what a miracle!
love you,
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Dec 02 2010 at 11:09am
Donna, the circulating tumor test is controversial.  The data is mixed enough that it is not considered reliable by most doctors.  (Worse than tumor markers, even).
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote diane1234 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 03 2010 at 12:42am
Donna, I dont really know what all it involves. I just know they have it at CTCA. I had one done in June and they drew 7.5 ml of blood. I THINK YHAT IS THE AMOUNT DRAWN, I was told there were 48 breast cancer cells floatiing in that amount of blood they drew. She mentioned lets do this again and I agreed. I talked to them today and results should be in tomorrow. I do not know the accuracy of this test, but I just take ANYTHING they offer me.....Hope this helps you......
 
XOXOXOXOXOX
Diane
dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 03 2010 at 12:44am
Diane,

Interesting test.  Please let us know the results. 
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote diane1234 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 03 2010 at 5:22pm

As you all know I had this test done at CTCA when I crossed over into the stage IV world.....Small amount of blood was drawn in June. The results showed 48 dirty breast cancer cells floating around. Well again Dr. thought we should run it again since it has been so long. Takes a few days to get the results.......WELL THE NURSE CALLED AND WAS LAUGHING WITH JOY WHENI ANSWERED THE PHONE......THE RESULTS......ZERO!!!!!!!

I of course was happy. I am now on a NEW CHAPTER. I am considered in REMISSION....What a wonderful HOLIDAY GIFT!!!! I am of course nervous because I am on CHEMO break. ALL my counts are VERY LOW....and my Doctor says NO NEED TO KEEP BEATING YOU DOWN WHEN WE DONT SEE ANYTHING....SHE BELIEVES I MUST HEAL, so if and when it rears its ugly head again, I will have the strenght TO FIGHT!!!!!
 
I feel like I am in a battle with bullets being fired and there is NO AMMO IN MY GUN. My husband agreed that I NEED A BREAK!!!!!!! So I am trying to rebuild my health and dance with NED HOPEFULLY A LONG, LONG, LONG, LONG time......I would actually take FOREVER!!!!!!
 
May God Bless EACH and every one of you,
Diane
dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo.
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