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unklez
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Joined: Sep 05 2009
Location: New Jersey
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Points: 1000
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Posted: Dec 01 2009 at 10:33pm |
Dear Donna,
That is sort of like how it happened with my wife, ie nurses right by the chair and closely watching. They say most people who are sensitive get their reactions in the first 2 Taxol doses. She got the reaction (felt a choking sensation and extreme heat in chest and head, etc.) in the first dose and with less than 14 drops infused. The nurse was ready with a couple of syringes and I think she injected one of them very quickly in the drip. It was scary but the worst passed soon and she recovered in a few seconds. The oncologist recommended against continuing given the reaction was strong and early in spite of benadryl and decadron doses. Those few seconds tell you how fragile and small, yet important, our lives are. One pooof, it's gone.
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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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123Donna
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Joined: Aug 24 2009
Location: St. Louis, MO
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Points: 13510
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Posted: Dec 01 2009 at 10:39pm |
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Linda,
It sure made me appreciate the chemo nurses even more. It takes a special person to work in the chemo, I mean Infusion room.
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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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123Donna
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Joined: Aug 24 2009
Location: St. Louis, MO
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Points: 13510
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Posted: Dec 01 2009 at 10:43pm |
unklez wrote:
Those few seconds tell you how fragile and small, yet important, our lives are. One pooof, it's gone. |
Perfectly said. I'm so glad that Onty is OK. Donna
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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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LRM216
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Joined: Mar 18 2009
Location: Marietta, GA
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Points: 1196
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Posted: Dec 01 2009 at 11:04pm |
Donna,
Yes, they certainly are special, to say the least. Mine were all angels and I felt so well protected by them. When I went back for my 2nd round, I had a different nurse, and I was in a panic because I didn't have the same nurse as the first round. How silly I was, I had a different nurse at least 5 times out of my 8 rounds and it would be a tough sell for me to choose one over the other as more special!
Linda
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Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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mainsailset
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Joined: Jul 27 2008
Location: Washington State
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Points: 5004
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Posted: Dec 03 2009 at 2:15pm |
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I remember sitting there the first time and my heart started to flutter. I was fine after they slowed the drip but it is this overwhelming feeling with these drugs that everything happens so fast and we are so not in control. And how bizarre it was to have the man next to me pass out, alarms screamed, nurses raced around, doctors came flying in and somehow there we all sat, jaws dropped as a fellow patient was attended to whilst we all were still hooked up to this bottle of battery acid. It's all just amazing.
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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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SusanE1104
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Joined: Jul 24 2009
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Points: 436
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Posted: Dec 03 2009 at 2:36pm |
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I had a rather humorous situation once when a fellow patient had a reaction to her chemo. I had just had my infusion of Benedryl and was drifting off to a nice nap when all the excitement started happening. I was just TORN between forcing myself awake to take it all in and enjoying my nap. The nap won out, but I kept one ear open to what was happening. The patient was OK once they stopped the chemo and gave her some extra Benedryl. They started it again later, and she was fine.
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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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SagePatientAdvocates
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Joined: Apr 15 2009
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Points: 4748
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Posted: Dec 28 2009 at 9:51pm |
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bump for a friend..
all the best,
Steve
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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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scared
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Joined: Nov 09 2009
Location: Seattle
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Points: 224
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Posted: Dec 29 2009 at 1:21am |
I did not read the article, I read a lot of the posts here about Taxol. My wife did 12 weeks of it and we put together our team of doctors and have complete confidence in their abilities. Dr. Rinn of Swedish Cancer Institute is one of the best in the area, she is up to date on breast cancer and trials. She stated that if we did what she recommended we would have an 85% survival rate.
Sometimes, you just need faith and that God is somehow guiding the team for the best results possible. It could drive a person CRAZY worrying about it.
So, we did what was best, and hope and pray for the best.
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Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.
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SagePatientAdvocates
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Posted: Dec 29 2009 at 8:45am |
Dear scared,
I believe Taxol may have helped save my daughter's life. She did not have the adverse reaction at infusion that some women have experienced. However, I think it is important that women realize that at times reactions can be severe.
I have friends who are actively going through treatment. Taxol is to start in two days and I wanted them to know to be careful as the infusion started and if there was an extreme adverse reaction for them to be aware that the infusion should not continue and also to have cardio tests done before the infusion and to have her heart monitored.
Perhaps you are right....don't worry about this because the reactions are rare...and yes, it can make you "crazy" to be more vigilant but I think there is some value in knowing about Taxol's side effects. Certainly, having the knowledge can make you more anxious and the anxiety, angst itself is not healthy. I do not know that there is an easy solution.
After the last AC infusion I was waiting for my daughter in the waiting room and a woman asked me how she was doing. I told her that she was going to start Taxol at the next infusion. She told me "when I had Taxol, within a few minutes it felt like my bones were crumbling. I screamed in a way my husband had never heard. Make sure she tells them to stop if she has a severe reaction." To be honest, I debated telling my daughter but I decided it was best that she know and when she walked back to the waiting room the woman was still there. I introduced my daughter and they chatted for a few minutes and the woman repeated her warning to her..
In the car, on the way home "honey, I know that was upsetting..I debated about telling you." "no, I am glad you did, Daddy. Always remember that I am viewing this through 'knowledge is power' glasses. I want to know"...and then she fell asleep..she fell asleep as she said "know"..my little girl was so tired and when we got home she sat next to me to watch a movie and she was asleep before I could work the clicker. I held her as she slept and thought back to the first time I fed her, in the pediatric ICU (she was premature..by weight..she was a twin and weighed under 5 lbs. her brother was over and she had to stay in the hospital) her first meal. She drank 1.5 oz. of milk and I was sooooo excited, as were the nurses. It was probably one of the nicest moments of my life. 36 years later, I thought back to that moment and as I held her I realized she would always be my little girl, no matter her age. Five years later, that is still the case and I believe always will be. I am very proud of the work she is doing as a middle school guidance counselor but the "little girl" feelings remain. Strange combo, in a way..but there it is.
scared, I am glad you have confidence in your physicians and I certainly understand and value your point of view. Good luck to you and your wife..
I think the only "for sure" thing in all of this is that cancer truly sux.
all the best,
Steve
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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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mainsailset
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Joined: Jul 27 2008
Location: Washington State
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Posted: Dec 29 2009 at 10:51am |
I believe there is merit in being a well informed patient so that one becomes an active partner in the team of caregivers.
As well as I thought I knew myself and my body, the process of going through treatments was one that taught and retaught me to be vigilant daily and never to hesitate to say stop or please read the pharmacist's label to be sure it is meant for me or no don't use Lidocaine, I'm allergic. My team was not unusual in that they cared deeply for me and my health but the onus was always on me to be their double checker and first responder.
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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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scared
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Location: Seattle
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Posted: Dec 30 2009 at 1:21am |
I agree that you need to know and understand the pro's and con's of treatment. For example if having chemotherapy will give you a five percent greater chance of survival then not having it that should be analyzed. I read about the Taxol effects and we understood there were risks, but the entire treatment gave us a survival rate that we could live with weighing the costs for us it was worth it.
Each person is different and knowledge is the best tool you can have in the battle with cancer.
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Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.
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trip2
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Joined: Jun 03 2007
Location: Under Palm Tree
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Posted: Dec 30 2009 at 11:29am |
I totally agree, knowledge is so important.
Thank heavens we now have this forum plus more and more news coming out about TNBC.
My first diagnosis I wasn't told what I had and honestly didn't know to ask too many questions. I put faith in my Onc to give me the right treatment. I was so clueless as many are.
This forum was not here, didn't know what kind I had so until I got my act together and began reading did I finally know what was going on.
The second time I wasn't told either but I knew by then to ask questions, I had researched but it had been because I had gone thru it before. For a first diagnosis you don't know these things unless you are told, the docs are doing better and I believe the patients are becoming smarter as observed in this forum.
I'm so thankful women have a place to come now, the need is huge to take it upon ourselves to learn but then some prefer not to. It's a choice.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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