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tjm View Drop Down
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    Posted: Dec 17 2012 at 7:27pm
I recently had a PET Scan and they not only verified my mass in my left lung in the upper lobe, that is not responding to Taxol and Avastin, but found a new mass in the hilar lymph node. This mass is located between my aorta and pulmonary artery.
I had the PET Scan in preparation to start SBRT on the lesion in my lung, but that has been put on hold now.
So last week I started Gemzar on weeks 1 and 2 and Carboplatin on week 1 and off week 3.
Would like to know how others did on these chemos.
The first week I had fatigue, nausea and diarhea on days 2 and 3 after chemo.
Thanks for you information.
Traci
 
Dx.6~30~11~TNBC,Stage 4 mets to lungs, BRAC neg,Since Aug.2011, Taxol & Avastin,NED 3~1~2012,4~2~12 Mastectomy,5~17~12 New lesion lung, Taxol & Avastin, New Hilar LN lesion,starting Gemzar & Carbo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2012 at 7:42pm
Hi Traci, my sis tried the Gemzar by itself and had to cut it back because she couldn't tolerate the side effects of the nausea and diarhea. Discussions with doctors about doseages can sometimes be rewarding rather than just alltogether stopping a chemo and moving on to a new one.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2012 at 10:05pm
Traci,

 I had gemzar, carboplatin in the clinical trial with iniparib.  Tx was both drugs combined week one and two, then off week 3.  I really didn't have too bad side effects, except fatigue and low blood counts and elevated liver enzymes.  I was able to work through treatment.  It was more tolerable for me than Cytoxin and Taxotere.  I didn't lose my hair either.  Did they give you any steroids?  They gave them to me and had no nausea or diarrhea.  Hope your next tx goes better.

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 majjers Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2012 at 1:39pm
Hi Traci,
 
We are sisters in TNBC and the spelling of our names - how lucky! Wink  Like you, I have masses in lungs and node areas. I did Gem/Carbo last Feb to April and it kicked butt. My Onc never adjusted the dosage (that I know of) and with only 3-4 treatments almost everything resolved. The problem was my platelets dropped and wouldn't come back in "normal" time. Only once did I get a Neulasta shot for whites and reds. So I went on chemo holiday from May-Sept. because like you, I had done Taxol/Avastin prior and I just felt my body needed a break.
 
In October, I was referred by my Onc to Ana Gonzalez at MDA Houston and I love her! The first trial I went on did nothing and I had progression. So, Dr. G and I decided that since Gem/Carbo worked so well the first time and I had already had quite a break, we'll hit it again.  For the first time ever, I was able to get Day 8 on Day 8!  My problem is the opposite - constipation. The thing that works best for my nausea is a Sancuso patch.  I put it on about day 3 after the Carbo/Gem dose and it works for 7 days around the clock.  It's pricey but a lifesaver.  I've been able to work my 40 hrs and keep on rollin'.  I know you are tough being a nurse and all but there's only so much we can handle symptom-wise so I hope you start to get things under control quickly AND I hope that this regimen kicks butt on those lesions!
 
My best to you,
Traci
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2012 at 5:35pm
Hi Traci,

I, like Donna, did not have too many side effects on the gemzar/carbo cocktail. I like the fact that my hair didn't fall out, and I did not have any nausea. I did get constipated, but I think that was from the steroids. I do remember feeling very tired in the later cycles - that was my biggest issue. I know the Gemzar is tough on the white/red blood cells. The only time I remember any stomach issues was when i stupidly ate blue cheese (yes you all read that right). I had it in a salad, and got sick to my stomach. The most important thing is that it did shrink my tumor before I had the surgery about 70%. I had 4 cycles before the surgery and the final 2 after the surgery, so that gave me a little break to recover and gain some strength back before completing all chemo.

I hope Traci that you have much success with this regimen!!!
Best Wishes,
Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tjm Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2012 at 7:43pm

Had chemo today. Almost did not get treatment because my granulocytes was only 1.6 and at my facility they do not give you chemo if the granulocytes are 1.5 or less. All of my other counts droppped, but not low enough to need intervention. My next treatment won't be until January 2nd, so that should give my counts a chance to rebound. They are giving me Decadron IV pre-treatment and also added Pepcid to my pre-treatment meds. I know it sounds trite, but I really glad to hear I might not loose my hair. It is just coming back in nicely.

Thanks for all of your suppport!!
Dx.6~30~11~TNBC,Stage 4 mets to lungs, BRAC neg,Since Aug.2011, Taxol & Avastin,NED 3~1~2012,4~2~12 Mastectomy,5~17~12 New lesion lung, Taxol & Avastin, New Hilar LN lesion,starting Gemzar & Carbo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2012 at 8:06pm
Traci - it is certainly not trite to be happy that you might not loose your hair. For me, it really was a big deal, and I am sure it is for many many women. I'm glad you were able to receive your scheduled treatment. I had the decadron pre-treatment too. I do hope you have a happy holiday and get some rest for the new year!!!!
Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonW35 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2013 at 2:50pm
I was diagnosed with TNBC last November after a lumpectomy for a what the surgeon assumed was a fibroademona. Turned out to be T1c, Grade 3, TNBC. I am still learning what all this means. They thought it was medullary but Vanderbilt said it was "invasive mammary carcinoma, no special type, high grade and high proliferation type." PET SCAN, breast MRI, and sentinel node check negative (yeah!!) and the surgeon says she is sure she got it all. So I am on the AC-T chemo now and wondering if this is the best, especially since I read that Cisplatin looks to be better than Taxol. I am negative for the BRCA genes and getting more genetic testing since I was 34 when diagnosed (35 now) and they say it is unusual for someone my age to have this cancer without genetic components. Can someone please help? Is this a good regiment? Should I be looking for a clinical trial? Are there any using Cisplatin post surgery? I am trying to be strong and positive but the fear just hits sometimes. The docs say a masectomy wouldn't improve my chances. I would really appreciate someone else's opinion on that, too. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2013 at 4:09pm

Allison

Glad you found us; sorry you have to be here. 

AC-T (either dose dense AC-T or dose dense AC- 12 weekly Taxol or TAC (where T is Taxotere)) combinations are the standard of care for high risk BC, including TNBC).  There are limited studies indicating that cisplatin may benefit patients with BRCA mutations but how that extrapolates to the non BRCA population is unknown at this point.  There are trials involving cisplatin but as your docs say they are generally in the neoadjuvant setting (chemo before surgery).  There is the Hoosier Oncology cisplatin/rucaparib adjuvant trial for TN patients who did not get a pathological complete response again for patients who had neoadjuvant chemotherapy.  I am not aware of any trial that would add on additional adjuvant therapy in the absence of evidence of ineffective chemotherapy (because your tumor was surgically excised, there is no way to tell if the ACT will work or not – in the adjuvant setting, the chemo is presumably targeting micromets, not detectable by standard methods).

Your docs are correct regarding the survival stats on mastectomy vs lumpectomy with radiation, in general, although lumpectomy with rads may have a slightly higher local recurrence rate.

If I were in your position, I would focus on getting through the chemo and taking care of yourself.  Basically, there are no good data that can predict who will or won’t respond to ACT.  A number of ladies here who received neoadjuvant ACT did achieve complete pathological response, which is to say, their prognosis is much improved.

12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonW35 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2013 at 1:55pm
So I got through the AC and am starting the Taxol on the 27th. Still very scared and wishing I had gotten the second opinion from MD Anderson, but they won't see me until I finish treatment at Vanderbilt. I would appreciate a heads up on some of the likely side effects and ways of managing them. I know about the neuropathy and fatigue, although would appreciate some advice on ways to handle the former. I also have narcolepsy so fatigue isn't anything new for me. Also, what happens when I finish treatment? How do they keep tabs on whether the (expletive) comes back? Has anyone had mastectomy and radiation? Did you have to convince your doctor?

I also wanted to let whoever is interested know about Good Wishes, a company that will send a free scarf or head wrap to anyone experiencing hair loss as a result I'd illness, injury, or treatment. I just received mine (100% silk) with a card full of hand-written good lucks. It brightened my day, which is a big deal when in the middle of all this. The site is www.GoodWishesScarves.org.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tjm Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2013 at 11:13pm
Hello Allison
The Taxol is should be nothing after the chemo you have all ready had.
I took Taxol for a year and a half. Main problem was the neuropathy in
my toes. I was started on Vitamin B12 sublinguinal twice a day. Some
ladies even get B12 shots to help prevent/slow down the neuropathy.
After a year I had to go to Neurontin, because my B12 levels were too high
and it was not helping as much. The Neurotin was very helpful.
I have been off Taxol for 3 months and only have some problems in the
very tips of my toes.
Best wishes on your next round.
Traci
Dx.6~30~11~TNBC,Stage 4 mets to lungs, BRAC neg,Since Aug.2011, Taxol & Avastin,NED 3~1~2012,4~2~12 Mastectomy,5~17~12 New lesion lung, Taxol & Avastin, New Hilar LN lesion,starting Gemzar & Carbo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tjm Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2013 at 11:19pm
Allison,
Also, had a mastectomy of the affected side, when I was in my NED stage. I was just ready to not worry about not having a tumor in my body. Doctor was very agreeable. I was really glad I did, beause the found a small area of residual disease. Also, another reason, I had a mastectomy, was because my doctor did not want me to have radiation now. Since I am a Stage 4, he wanted to save my radiation for another day if I needed it. With a lumpectomy I think it is standard to have radiation.
Take care.
Traci
Dx.6~30~11~TNBC,Stage 4 mets to lungs, BRAC neg,Since Aug.2011, Taxol & Avastin,NED 3~1~2012,4~2~12 Mastectomy,5~17~12 New lesion lung, Taxol & Avastin, New Hilar LN lesion,starting Gemzar & Carbo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonW35 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2013 at 7:16pm
Thanks Traci. I didn't know you could be on Taxol that long. What does NED mean? I'm so scared of this stuff, I'm ready to have a double mastectomy and radiation if possible.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tjm Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2013 at 10:07pm
With Stage 4 TNBC since there is no set game plan, my doctor believes in using the same chemo as long as it is working and the side effects are tolerable to the patient. The Taxol and Avastin stoppped working in December 2012 and I have now gone to Gemzar and Carboplatin.
NED means no evidence of disease. This is when no signs of the disease are picked up with x-ray, lab and physical exam.
NED of course is everyone's goal!
Take care.
Traci
Dx.6~30~11~TNBC,Stage 4 mets to lungs, BRAC neg,Since Aug.2011, Taxol & Avastin,NED 3~1~2012,4~2~12 Mastectomy,5~17~12 New lesion lung, Taxol & Avastin, New Hilar LN lesion,starting Gemzar & Carbo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 26 2013 at 8:38am
Allison,

Most find that Taxol is waaaaayyyy easier than A/C. You may also consider taking L-Glutamine to help fend off the neuropathy in addition to the B12. Good luck! You are through the worst of it!!

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonW35 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 26 2013 at 12:49pm
Thanks! I am going to see if I can make appointments for nutritional counseling at Vanderbilt, too, and a fitness assessment where they help develop a home based exercise program. If nothing else, it helps having something constructive to do.
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