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Well - this is it

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kellib View Drop Down
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    Posted: Apr 05 2010 at 12:00am
I had my PET thursday and found out my oncologist should have listened to me and I should have been more pushy. I actually did have a tumor in my sacrum and now I have four more small tumors/lymph nodes infected in my armpit, behind my collarbone, behind my left implant, and above my hipbone in the muscle. I am a mess. Oh - but he did tell me that nothing was life threatening - WHAT !!!!!! And I am wondering why they didn't extend the PET through the brain - just up to the base of the skull.

He wants me to use the Bevacizamaud and Abraxane, I have had ABX once already due to a Docetaxel allergy. He is also nervous that I am going to fire him - especially after I make my trip down to Mayo Rochester on Tuesday.

I fell twice on my butt and fractured my sacrum. He told me at the end of January that I didn't need a PET, even though my titers had doubled but were not above average (35 out of 38). I had also asked my local doc for a thyroid ultrasound because my throat felt full - and she said no. Now I have a tumor there. What is wrong with these docs?

anyway - we are devastated but hopeful that Mayo can extend my time a little. I am currently at my moms awaiting my appt and then to return home. I feel pretty good - and started the diet shown in the "Anti-cancer" book. Wow - that is a lot of information and good reading.

Seems that my onco thinks my cancer loves trama and injury. The tumor in the sacrum probably came up after I fractured it (Abraxane gave me osteoporosis and I am now on the Zometa treatment) and the others he said may have been caused due to reconstruction. Hence the use of the Beva - to stop the growth hormone cycle the beast if feeding on.

Ok friends - please give me any info you can - I need it desparately and since I am new here I need to get into treatment fast. Days are a wasting and I want to try and be here on this earth with my family a little longer. You all are strong and wise..........so fill my cup :)
Diagnosed 8/08-stg 3A
3/2010 Tumor in Sacrum and 5 nodes around body. Carbo/Gem starting 4/9
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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: Apr 05 2010 at 12:47am
Sweetie, I am so sorry.  What a blow to hear those words, and feel them reverberate through your life and dreams.  Imagine my arms around you, surrounding you with love.  We are here for you.   Time for a few opinions on what to start with, though Abraxane and Avastin sounds like a reasonable choice.    Try to remember that having it come back to the bone is actually good news, as people can walk around for 15-20 years with them.  Same goes for lymph nodes.  We have seen women on here have a lymph recurrence every year, year after year, and they are living well.

Much love,
Denise

*eventually you'll want to try a parp inhibitor, so keep your eye on those trials and what the exclusions are, and be sure not to do a chemo combo that would prevent you from trying it out.  It used to be that carbo +gemzar was the combo to avoid without a PARPi, but that is changing now that compassionate use is a possibility. 
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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2010 at 12:53am
Dear Kellib,

I am glad you are going to the Mayo clinic for a second opinion..

In my unprofessinal opinion, most likely your metastases is from your breast cancer...but please Mayo to rule out something called 

Ewing’s sarcoma of the sacrum



if it is determined that you may have a sacral sarcoma then I would ask the docs at Mayo about-

Dr. Laurence Baker at University of Michigan..


I am not a doctor..not telling you what to do..please do not take any of my words as medical advice..

good luck to you...

all the best,

Steve

p.s. I would also strongly suggest you consider finding a new primary physician and oncologist..maybe the good folks at Mayo can help you? I hope so..






Edited by steve - Apr 05 2010 at 2:17am
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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kellib View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kellib Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2010 at 5:32pm
Mayo was such an awesome experience. So organized and, although overwhelming, full of hope.

The onco there said that he didn't think my return was caused by trama - he said the tumor started in the sacrum and spread from there. I did ask if it was the same kind of cancer and they said yes. So the TN beast is still fighting me.

It was hard to hear everything all over again ("it will eventually take your life", "we can't say how long" "we will do everything we can") and I cried most of the way home (again). But I started yelling at my cancer in the car (and I am sure the people on the highway thought I was wacko) "I will not die now" "You will not take me now" "I want to live long enough to have an AARP card" (don't ask me where the last one came from).

Chemo starts Friday morning (I am startng with Carbo/Gemz (day 1) Gemz (Day8) off (day 15) start over. Can you all fill me in on what to expect? Is the normal regimine or is it usually run on a 28 day cycle. I thought it was 28 and I have a message in for the Mayo Onco. My original onco is just following their orders. If the nodes that I can feel don't shrink in 2 rounds - then I have to go back down and they will try something else and do a scan. If it is shrinking then I have a scan in three months.

Yes I am scared - but finding peace in all of this. The Lord gave me the path to a second opinion and a better team of docs, so now I fight with all my heart and soul, eat a anti-cancer diet, meditate, and fish off the dock when I am too tired to go in the boat. :)

Love you all - (bruised but not battered)
Diagnosed 8/08-stg 3A
3/2010 Tumor in Sacrum and 5 nodes around body. Carbo/Gem starting 4/9
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beachgirl6 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2010 at 10:13pm
gemzar/carbo not so bad.  I did it for 4 months with no side effects.  Just a little fatigue on the first few days.  PET was NED.  Did 4 more months as an extra.  Then Feb 10 PET showed beast is back.  After 4 months of g/c my hair started to thin.  I had been told no hair loss so this was upsetting and shocking.  Overall its not bad cocktail and I would do it again.  Ask about PARP.  IF you start cocktail before you may be disqualified like I have been though FDA is supposedly opening it up for compassionate use so prior g/c not a problem.  Long wait though for paperwork to be processed. 
 
1st 4 months I did 2 weeks on and 1 week off but that changed quickly to 2 on 2 off because of platelet issues.  My platelets took a beating.  I needed a platelet transfusion in Jan and was pissed.  Had to do it in the ER and now $20000 later....insurance paid but pissed it cost so much doc was surprised but he seems to have no clue on the money issues. 
 
2nd 4 months I did 1 week on 1 week off. 
 
The cycle is typically g/c on day 1, day 8 just g.  My doc ended up fixing it up to be a little carbo both times so that my platelets didn't crash quite as much.  Helped a little.  Have doc really watch that and be ready to gimmy rig it if necessary. 
 
Sloan kettering agreed with cocktail in June 09 and it was their idea to do 4 more months after good Sept 09 PET. 
 
Again, I'd do this one over again if permmitted.  Doc said he would consider that if I could get the PARP.  The problem with the parb is that you have to do twice a week on the on weeks for the parp.  Such a pain and so sick of IV's.  I don't have a port and refuse to get one so multiple IV's is a bitch.
 
good luck!!!
 
beachgirl
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2010 at 11:04pm
Dear Kellib:
So sorry to hear about your tumor, but I am so glad that you went to the Mayo Clinic!!!! Yeahhhh!!
They will take good care of you and when you inform the TNBC TEAM here they will confirm things every step of the way!  They are knowledgeable, bright, and well informed of primary cancers and secondaries so now you relax and know you will have the BEST TREATMENTS available.... We are praying for you and will do the research on whatever you need.  Do you have someone who can be with you during your treatments?  If not, find someone now.  Don't ever be alone, contact us and we can find someone in your area... Take care, and know that we are all sending lots of HUGS and Healing Messages to you.. your sister on the journey, Helen xoxo
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kellib Quote  Post ReplyReply Direct Link To This Post Posted: Apr 08 2010 at 8:32am
I am blessed with a wonderful family and a few good friends up here that would change their schedules for me is needed. I also have a great friend whose teenager babysits for me so if I need an extra hour of sleep she can babysit my 5 year old. My mother is renting an apt here during treatment and so I have her around too.

I am also using the "anti=cancer" diet and can tell the difference already in inflammation. My hands are not swollen when wake up and my legs to do retain water like they used to. That was a wonderful book ("Anti-cancer a new way of life").

I was told hair loss with carbo/gemz so we are having a ceremonial "shaving of the head" in two weeks.   

Have a wonderful day - the sun is out here and I can't wait to take a walk with my little girl.
Diagnosed 8/08-stg 3A
3/2010 Tumor in Sacrum and 5 nodes around body. Carbo/Gem starting 4/9
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bonnie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 08 2010 at 10:20am
Kellib:  I am so sorry that you are dealing with all this again.  I do want to let you know that, like beachgirl said, gemzar/carbo is not so bad.  My daughter, Ashley, is on this combination now and on Day 3 after treatment, has some back pain that runs for 24-36 hours then goes away.  And also like beachgirl said, Ashley's biggest issue is platelets and low blood counts.  So far, she has had to have a platelet transfusion last week followed by two units of packed red blood cells while hospitalized this week with the low blood counts and pneumonia.  She came home yesterday!!!  Onc plans to reduce dosage for next 4 treatments to try to prevent this from happening again.  Ashley does g/c both on Day 1 and Day, then is off on Day 15; and starts the cycle over.  The onc is going to do 3 rounds of g/c and then a PET scan to determine how it is working.  You should not have total hair loss on g/c, but maybe some thinning.  So don't shave too soon if you'd rather wait and see!  Take care and enjoy your little girl. 
Bonnie
Bonnie - Daughter Ashley dx TN 8/09 @ 22; St3, BRCA1/2-; AC&Ixempra done 2/10; mets to lung 3/10; G/C 3/10; PARP 6/10; sternum mets 9/10; NK012 failed; mets to liver, spine, kidney; Avastin/Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Apr 08 2010 at 10:23am
Kelli b:
I am so glad to hear that you have a great support system!  It is so important for life in general to be supported and loved...Babysitters are great too...So thank you for letting us know this. At least we know you are surrounded by wonderful people.  This helps no matter what we go through. 
 
The hair shaving was a ceremony for sure.  I went to a old boss that I worked for 25 years ago.  His daughter fitted me for my wig prior to the shave.  My daughter took the pics as he was shaving and all in all I found out where my daughter got the V in her forehead and the strawberry on the back of her neck...from me..ha, ha.  all is not bad, I actually didn't look to bad with no hair????
 
Yes, the sun is shinning here as well, so have a WONDERFUL DAY and enjoy your walk.
Your sister on the journey, Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Apr 08 2010 at 11:09am
Hey, Kelli.  You can hold off on the hair shaving if you want.  Like Beachgirl says, it'll thin in a few months but you should be able to keep a 'reasonable' style for a long time.  (if you're anything like me, you really like being able to look 'normal' out and about...you may as well enjoy scarf-free living if you can).
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 kellib Quote  Post ReplyReply Direct Link To This Post Posted: Apr 08 2010 at 4:28pm
Thanks for the hair update - I don't have a very pretty bald head so that is wonderful to know. I wear my hair on the short side so that will help.

Thank you for all the information and support. Tomorrow is day 1 - the first day of the rest of my life.

Diagnosed 8/08-stg 3A
3/2010 Tumor in Sacrum and 5 nodes around body. Carbo/Gem starting 4/9
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beachgirl6 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 08 2010 at 9:30pm
kellib
 
Don't shave your head yet.  Be patient and see what happens.  My hair was very short when I started combo in June 09.  The growing slowed but it still grew.  Then in Oct it started to thin.  First not bad just some strands.  it got to be more.  It wasn't so bad but I was afraid to wash my hair too much and blow dry it.  Afraid as time went by more and more would fall out. 
 
I bought a satin pillowcase for sleeping.  This really helped as my hair didn't pull on the cotton one so little to no hair on pillow or pjs in the am.  Well worth it.  Got it at Bed Bath and Beyond in the pillow section.  It was a cover and it cost $5-6.  WEll worth it. 
 
I washed my hair over the sink using a cup of water at a time to rinse it instead of full blast water.  It wasn't until Dec that significant hair fell out.  Still no signifiacant bald spots.  I didn't feel comfortable going wigless.  I'm trying to keep this part of my life private this time around.  MLM on the inspire website told me don't shave your hair you'll know when its too thin to deal with.  She was so right.
 
Oh yeah....just bought a new hair thickening product off sephora website $14 another well spent cash.  So if you keep your hair short.  Your careful and maybe try this product. Things might work out.
 
beachgirl
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Post Options Post Options   Thanks (0) Thanks(0)   Quote psychgurl Quote  Post ReplyReply Direct Link To This Post Posted: Apr 09 2010 at 1:13am
Kellib,
I'm so sorry to hear of your news.  I recently had some similar news and I am still having a tough time with it.  I am glad to hear of your positive experience at Mayo as I am headed there as soon as I can get a referral.  Do you know any docs there who specialize in triple negative?
I hope you keep your hair.  I would also recommend holding off on the head shave.  I did mine prematurely and I still have hair, albeit pretty darn thin. 
I hope your treatment goes as well as it can.
Deanna
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6/2008 stg 1, 1.3cm, lumpectomy, carbo/taxo, and radiation
2/2010 mets to lungs, armpit, below sternum, lft clavicle, lower trachea, and possib peritoneum?, Abraxane and Avastin now.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kellib Quote  Post ReplyReply Direct Link To This Post Posted: Apr 09 2010 at 7:32am
My doc there at Mayo, Rochester was Dr. Moynihan. Thank you for the tips beachgirl.

Diagnosed 8/08-stg 3A
3/2010 Tumor in Sacrum and 5 nodes around body. Carbo/Gem starting 4/9
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 09 2010 at 9:51pm
Kelli,
 
Big hugs to you, so sorry that you have to go thru this again but you will overcome this disease!
 
It is good to know you have a great support system, what a difference that will make.
 
Please keep us posted on how you are doing.  How did today go?Heart
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sugar77 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 09 2010 at 10:37pm
Kelli, I've not had that regimen myself as I had Taxotere/Cytoxan.  However, my father had what sounds like the same regimen with the same cycle for bladder cancer and he did not lose his hair.  I don't even think it thinned much. He tolerated it really well. I hope your treatment goes well.

Sherri
DX IDC TNBC Oct. 27, 2009, age at diagnosis 45, Stage 1, Grade 3, <1 cm, 0/2 nodes, lumpectomy, Taxotere/CytoxanX4, finished Feb. 8, 2010, radiation completed Apr. 21, 2010.
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