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ladylake88 View Drop Down
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    Posted: Nov 29 2009 at 3:27pm
Hi, I am new to all and need some help. I have been diasabled for 10 years now and got TNBC last year. DX 3/08. Lumpectomy 5/08, 8 lymph nodes removed 6/08 (cancer in the sentinel only) and then chemo - Cytoxene and Taxotere, 7/18/08. The onc. was afraid Adriamycin would be too hard on me. Had a double (elective) Mast. on 10/08 and was filled with cancer. No further treatment. Found skin mets the 1st of Aug this year. Just finished 35 rds. of rad. I could feel 3 lumps a week after the rad. was done. So they biopsied one of them. Had a PET the next day and it came back clean. Path report not back yet. Onc. #1 wants to put me on Adriamycin now. ( am allergic to anything that ends in mycin) but she said she would give me lots of steroids. Went and got a 2nd opinion and onc. #2 wants to use Avastin & Zeloda. I have to make a decision by Wed. I am afraid of the Adraimycin because of all of the side effects and I feel so sick now anyways since the rad. It has flared up my other symptoms. Any advice out there?? Please Help!! Thank you.
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2009 at 3:42pm
Hello Ladylake88 and welcome.
 
My goodness you've been thru so much and now again you are faced with decisions.
 
I have not had advanced BC nor used these meds but found one study in regard to Avastin and Xeloda.
 
I'm sure others will be along soon to help.  Try doing some research online and see what you can find.
 
http://www.medicalnewstoday.com/articles/59184.php   This is for first line therapy.
 
Perhaps there is a trial you could join?


Edited by trip2 - Nov 29 2009 at 3:44pm
Stage 2 2003
Stage 1 2007
BRCA 1+
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thinkpositive View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thinkpositive Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2009 at 6:44pm
I have done both Adriamyacin and the Avastin/Xeloda combination for my lung mets.  I have several friends who take the Avastin Xeloda combination for colon cancer as well.   If I had to choose I would do the combination - Xeloda will give you fatique and hand/foot syndrome.   it was effective in reducing my lung mets for several months and has been very effective for my friends with colon cancer.   Avastin did give me high blood pressure but it is back to normal now that I am off of it.
best of luck with your treatment. 
dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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ladylake88 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ladylake88 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2009 at 7:57pm
Thanks so much. This is the kind of input I need to hear. I hope this combo is good with skin mets, as onc. #1 says they are very hard to control and thinks I should do Adriamycin, but if C & T didn't have any effect, I don't have a lot of faith in the Adriamycin, especially if I am allergic to mycin drugs. It sounds like the combo is easier to handle, too. I don't think I can take too much more, but I keep surprising myself when we want to survive. Have a great night!
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Amy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Amy Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2009 at 8:00pm

Hi I am 31 years old have done Adriamyacin and Cytoxin every 3 weeks 4 times, then taxol 4x once a week (the plan was 12 tx) all while taking Avastin every other treatment. It was really hard on my body I started in June of this yr and had to completely stop all chemo in Oct. due to what started with shortness of breath and a cough my EKG was slightly off my pulse and blood pressure was high, it turned out one of the chemo was causing congestive heart failure they think it was Avastin or the Adriamyacin so I'm out of the clinical trial with Avastin it is a great drug but does have serious side effects. We fight the main problem cancer and in the process we take the risk of side effect that may or may not occur but you know your body and when something is wrong pay close attention and tell your doctor of any problems immediately. It has been 7 weeks and no chemo till my heart and breathing is better.I still have a persistent cough almost 2 months now. I did see a lung specialist and a cardiologist for my heart I am now taking 2 heart meds and a high BP med also 2 inhalers one steriod n albuterol. I also had low white blood cell due to chemo as expected and caught H1N1 virus that also was effecting my heart with a touch of pnemonia I got thur it all I'm a fighter it was a rough few weeks. My Dr I trust and he wants to do 8 more taxol tx once my heart is better and radiation daily for 6 weeks. I do pray for God to lead the way and give me direction on what to do. I have triple negative breast cancer it is agressive and not hormore related so is treated slightly different in medications but I have already had a bilateral masectomy and am considered cancer free I will be tested with PET scan to check for recurrence next week I have faith it will be clear.

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unklez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2009 at 11:06pm
Dear LadyLake,
Welcome here. Pam and ThinkPositive have given you some excellent advice and resources to look at. Good luck in your decision. Know that we are with you in whatever you decide and will pray for your well being.

Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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ladylake88 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ladylake88 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2009 at 11:14pm
Amy, My heart goes out to you. You sure have had a go of it. From the reading that I have done, Adriamycin causes heart problems. There is a test they want to do on my heart if I decide to take that drug. It can cause cardiac arrest in some people. I have read that Avastin can affect you BP or maybe that was Xeloda. I will have to check. My prayers are with you. You are a fighter. Hang in there. Where is the clinical trial going on for Avastin? Lynn
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thinkpositive View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thinkpositive Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2009 at 3:02pm
Amy,  I hope 2009 is the toughest year you will ever face.  You certainly have dealt with a lifetime of challenges already.   I have had Avastin along with other drugs and did suffer from very high blood pressure until they put me on blood pressure meds.   The good news is that once I was off the drug for several months it came back to normal.  
Sounds like you have consulted all the right specialists.  Take it easy so your body can heal.
Keep us posted.Smile
dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2009 at 4:44pm
Adriamycin can cause Congestive Heart Failure in some people.  That is why they usually  do the Muga scan before you use Adriamycin.
 
I had the muga and was cleared but now have Congestive Heart Failure.  It came on a few years after treatment but my heart doc said it came from Adriamycin.
 
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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unklez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2009 at 5:40pm
Adriamycin and Avastin are believed to cause heart issues in 1% and 3-4% patients respectively. In combination the number is believed to be closer to 4%.

Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2009 at 6:51pm
Hi, LadyLake.  First off, I'm so sorry you are having to go through so much.  Did the biopsy come back yet?     If I were you I wouldn't be ready to make any kind of decision until getting a hold of that information.
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 ladylake88 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2009 at 7:31pm

Thank you everyone for your replies and help. Just got my Path report back and the biopsy was positive for cancer. Those original skin mets came back the week I stopped radiation. The PET scan did not pick them up as they were under 1 cm. Has anyone out there gotten skin mets after their mastectomy?? I have to make a decision by Wed. as to what chemo I want to go with and I am scared of the Adriamycin. I don't know what to do and don't have enough time to get a 3rd opinion. Had my port in today and they did not give me anything really for the pain. I was sobbingCry while he was doing it. I could feel everything. I have been on pain meds for so long I have built up such a tolerance to them and what little they gave me had no affect on me. I am so bruised tonight and can barely move. I told them I was going to write a letter to the head of the hospital and that really shook them up. They talked to me for over a half an hour and then brought in the manager. I should send him a photo of what my chest looks like now. We are kinder to our animals sometimes.

God Bless All of You and Thank you for your Help!Star

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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2009 at 7:55pm
Hi Ladylake,
 
I'm so sorry you felt pain getting your port put in but it should heal quickly.  Your soreness shouldn't last too long or you need to call the surgeon's office.  You can call and tell them the pain meds aren't working and to give you something else.
 
I was put to sleep when I got mine.
 
 
 
 
 
You might try researching online, I found several forums discussing this on one search engine.
 
Best of luck to you with your decision, let us know.
 
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2009 at 8:10pm
Sweetie, you sound so battered.  I hope you can be really good to yourself tonight.  Wrap up tight in a warm blanket, get something good to eat, and watch a movie or read a good book - preferably with someone you adore.  Imagine yourself enveloped in loving, compassionate arms.  Let people take care of you, if they offer.   Reach out and ask for help.

Skin mets after a mastectomy definitely happen with TNBC.  I haven't experienced it myself but have heard from quite a few who have had to deal with the same thing.  You are not alone. 

What a tough choice.   Maybe a third opinion is in order, and a look into clinical trials.  I wonder if carbo+gemzar+PARP would be a good choice for you?   Have you talked to anyone who can hook you into the clinical trial world?  And have you been tested for BRCA?  If you are positive, I would definitely go for a PARP inhibitor if possible.  I've heard they work well for skin mets if you fall in the subpopulation.

Take care,
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 unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2009 at 8:50pm
Oh dear LadyLake,
Sorry to hear that your biopsy came back positive for cancer. Also sorry to hear you had to ensure pain with the port insertion procedure. You should definitely call the doctor and get something stronger for pain. If that does not work out, do write to the hospital.



Edited by unklez - Nov 30 2009 at 8:51pm
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2009 at 3:08pm
Ladylake,
 
How are you feeling today??
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kidzrn Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2009 at 4:03pm
I have no experiece with xeloda, but have done Adriamycin, cytoxan and taxol pre-mets stage. was only clear 1 year...lung mets. so carboplatin, avastin and taxol started....did that june 08 to feb 09. Continued on avastin alone since then. From everything I have read, the carboplatin or cisplatin are excellent choices for TNBC. You might see what he thinks about a platin drug and avastin....very doable combo with minimal side effects. My MUGA scan after adriamyin and now 18 months of avastin was slightly improved from pre-chemo MUGA scan....There is actually a clinical trial  with this combo you might want to check on....I have systemic lupus as well so had complicated medical history pre BC.....Here is the link to the study. Let me know if you have any questions. christi

http://www.clinicaltrials.gov/ct2/show/NCT00517361?term=carboplatin+avastin+breast+cancer&rank=9
christi
2006,TNBC,Gr3 dbl mast, 4AC/4T {NED 4/07}, Lung Met 4/08, Carbo, Avastin, Taxol/Taxotere (CAT)x4, Lung Surgery 9/08, 4 CAT, then Avastin every 3 wks...NED 2/09, 2/10, 6/10, 10/10 Scans 4/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2009 at 4:30pm
Ok....so what do skin mets look like?
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 Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2009 at 4:41pm
Hi Ladylake,

Sorry you are having to go through so much and make so many decisions.

I am interested to know where your skin mets are and what it looks like. I have not had skin mets yet but would be interested to know what to look for.

I pray that whatever treatment option you come up with work well for you. So sorry the port experience was a nightmare. Mine was sore and bruised the first week, but soon leveled out. I was lucky that my port was put in during a second surgery I had.

Love in Christ,

Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2009 at 4:44pm
Stage 2 2003
Stage 1 2007
BRCA 1+
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