TRIPLE POSITIVE GROUP
Comments
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bucky - Wow, my DH was in the Pentagon on 9/11, about 150 yards down the hall from the impact point, but 2 rings further in. The world is small indeed. My kids were in middle school when it happened, but my DS became a fireman, I am sure in part because of that day. He has a memorial tatoo shaped like a pentagon with the twin towers inside making up the eleven part of 9/11, and a red, white and blue fire helmet underneath withthe word "Remember". He designed it himself. We too lost colleagues and neighbors.
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Special K: We r so lucky to have our DH with us!! What a small world indeed!! After 9/11 we moved further away from the city and into the mountains of western NJ. Much more relaxing way of life and so beautiful!! We have alot of firefighter friends and my brother-in-law is one also. It takes a special breed of person to do that line of work. Very brave!!!
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specialk and bucky God Bless your families and what they have been through. Do you feel like your fight with cancer has so much more meaning because of them? You have definitely been given your hurdles!0
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Hello ladies,
I am happy to have found the site. Does anyone know how Lisa 1964 and cinrae who started the tCH string are doing?
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Good morning girls!
I came back to about 5 pages to read! I think I'm up to speed now.
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Arlene: I think they will have to give you a loading dose of Herceptin again. When I initially started chemo, it was TCH (so Herceptin) but the second round landed me in the ER so I started AC chemo (obviously no Herceptin) - so I just started back on just Herceptin and they had to give me the loading dose again. They said that if you wait too long in between you always have to start with the loading dose again. I'll be curious if that's what they do for yours.
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Thanks ACH. I'm thinking you are right. I'll find out Monday! Seems many of us ended out in the ER from chemo.
Arlene
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I had my first herceptin today. I totally passed out from the benadryl! The rest of today I felt fine hopefully that will be the case in the next 24-48hrs as that is when I felt the effects of the chemo.
I also went to my first support group tonight. I REALLY enjoyed it. It was nice to talk with ladies that are/have gone thru this. I of course was the youngest one there!! Pretty much what I expected!! If you have one in your area you should check it out if you haven't!! I also told them about this site as it has been so so helpful. I am so glad I found this site!!
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Glad it's behind you Karebear...I dreaded that damn benadryl each time. It made my legs jumpy. They finally cut it back. Good luck. I am on day three of Tamoxifen. The right support groups can make a huge difference. Linda
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Hi Karebear 1976,
Your DX is quite the same as mine! I would like us to stay connected with! I'm fine, only AI is burdening me. What is your hormonal therapy?
Best wishes
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Hi Slousha! I will start tamoxafin after radiation is over. I am also going to be getting the lupron shot for 5yrs too to keep my ovaries surpressed. Haven't had my period since feb.
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Carberry, Thanks so much!!! Yes, I think between my husband and I we have had enough trauma and illness in our lives!!!! Enough is Enough!!! But, what is it that they say? What doesn"t kill you, makes you a stronger person, and that is my mantra!!!!
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Thanks carberry - yes 9/11 brought focus about priorities, not just for me but for many. So many people died needlessly while going about their lives innocently. My BC is the latest in a line of issues so I already had a pretty good appreciation for the many positives in my life. My husband was an Air Force aviator for 28 years and I have seen the blue car with the 2 guys in service dress roll up to someone's house too many times, been to a lot of funerals of men too young to die. I have already lost Mom, Dad and only sibling in the last 10 years, faced a possible sarcoma in my leg 2 years ago which would have had a very grim prognosis (was B9, thank God), had a 3cm tumor (pre-malignant) in my ovary removed during a routine TAH/BSO ten years ago, so I have that happiness to see each new day! All of that has probably helped me deal with my current situation and my outlook.
On a happy note - last chemo was yesterday! The dog escaped 10 minutes before we left the house so I had to take myself while my husband tracked the dog around the neighborhood for an hour. We had removed his collar during the night because his tags were jingling around, so of course he was out in the world with no identifying info! He thinks it is fun to play "keep away" and it is all a game! When they took my blood pressure at the onc it was quite high so I had Ativan in the drip for the first time. WOW! Hard to keep my eyes open - fell asleep as soon as I got home and slept until 3:30 a.m. My DH finally coaxed the dog into the car and showed up so it was all good! Never a dull moment!
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HOORAY Special K. Your last chemo. How exciting.
I always get the Ativan and it really helps with the cold caps but doesn't put me to sleep fortunately.
Congratulations...you must be ecstatic.
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ArleneA - I think the ecstatic part will kick in after the ten days of the Big D which will start on Sunday! After #5 and the end-of-steroid crash I spent 3 days in bed not even moving except to go to the bathroom - by far the worst time I have had in the whole process. Just the cumulative nature of the beast. I am in a pre-ecstatic state - mostly relieved that I don't have to gear up for this again! I plan to enjoy today and Saturday knowing that next week will most likely not be fun! My sweet neighbors already took me out for a celebratory breakfast and gave me flowers and balloons! My husband wanted to have champagne last night but I was fast asleep! Maybe tonight! I am glad your US revealed no blood clot - I didn't expect to have one either, but nothing surprises me anymore! Both the onc and onc PA think it is swelling from the Taxotere and will resolve on its own. I had 2 1/2 months between my AND and the start of chemo with no problems in that arm and only started having issues after chemo so I am hoping that is the case. What looked like a cord in the armpit is no longer there, but if I overheat even slightly I get pain like the axillary web syndrome diagram, with a lot of pain in the top of my hand. It worries me as we head into summer in south FL - hot, hot, hot!
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specialK - Congratulations on finishing chemo!!!!
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Hurray special k!!!! The feeling is good knowing you dont have to go back for chemo again!!
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So right! It is awesome! Went for the last Neulasta - almost forgot my Claritin again, remembered just before the magic one hour mark! I guess I was lost in the excitement! Herceptin should be a cakewalk, breeze in and out - no more 6 hour extravaganzas! When did you ladies start on your AI meds? I forgot to ask the onc that question yesterday.
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I started Tamoxifen after I finished rads in early November. I had been done with chemo and just doing Herceptin for about 2 months.
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I don't need rads so will just continue with Herceptin but I will be having surgery sometime this month to replace my left TE - so maybe I will start after that. Seems like a good idea to wait until the SE from the last chemo are really done before we introduce yet another thing!
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Special K I was under the understanding that you should start Tamox or ALs within a certain amount of time after chemo. It was about 5 weeks for me although my onc wanted me to start 1 month later. The NP told me to wait till March 1st so it would be easier to know when to stop 5 years later. I still had plenty of chemo SE although not like before. I still have some slight neuropathy in my left heel, lifted fingernails/toenails some that still hurt, fluid retention etc. I was supposed to do my exchange May 24, now June 27th.
Why wait? If there are cells left floating around I say starve them now.
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HI all. I am considering my options for chemo drugs and would love input and advice. These are my choices:
1) Taxotere/Carboplatin every 3 weeks for 6 doses and Herceptin weekly for one year
2) Adrimycin/Cyclophosphomide 4 doses 3 weeks apart then Taxol 4 doses 3 weeks apart followed by 1 year of weekly herceptin
3) Taxol/Adrimycin/Cyclophosphomide 6 doses 3 weeks apart and Herceptin weekly for one year.
Does anyone have any advice or input on these choices? It's so easy to get confused, and stressed over choosing the right chemo drug.
My first chemo treatment is scheduled for June 16th. Pretty Scary Stuff.
I am also seriously considering enrolling in the ALTTO trial- and the enrollment deadline is June 10th- so I've got some big choices to make.
Thanks for sharing!
Christean
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Hello Christean:
I can't really suggest one or the other but I'm on the Taxotere/Carboplatin every 3 weeks for 6 treatments and Herceptin every 3 weeks for a year. I imagine you will have Herceptin every 3 weeks versus every week....I think.
They all have their side effects. I knew nothing about any of this and my oncologist really didn't even tell me I had a choice but just that I'd be on TCH. I'll be doing #4 on Monday and there is a big possibility that she'll end my treatments at #4.
You'll get lots of information here from others.
Good luck to you!
Arlene
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Christean - usually if you are node negative, your onc will order taxotere, carboplatin and herceptin. The Andriamycin is usually given to node positive women. It can cause permanent heart damage and TCH is safer for the heart and there is hardly any difference in effectiveness. When I went to see my onc for the first time, I told him no way would I have AC-TH as I had researched it but he had no intention of giving it to me.
Sue
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lago - did they delay your exchange due to the shingles? I have my next appt with my onc in just under 3 weeks for H alone so I guess they will bring up the timetable for AI at that point. I believe when I first began with them there was mention of Femara as the choice but we did not discuss in depth. I will probably be in surgery at about the same time as you to replace my left TE - I have an appt with my PS next Tues. to set that date.
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Yes my delay was due to shingles. My PS won't go near me until not only the shingles are gone but so is all the pain. If your body is fighting shingles adding surgery/fighting infection isn't such a good idea.
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lago - I would imagine anything that would further stress your immune system might trigger a recurrence and you definitely don't want that. My husband's grandmother had shingles on her face and I know it is so painful, I am so sorry you had to deal with that. It is definitely a lesson in how our bodies are still dealing with the aftereffects of this treatment even when we think we are beyond it. Even though you have to wait longer (with your stripper boobs!) I am glad that everyone is being cautious.
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SpecialK,
My Onc said the older studies show waiting to start Tamox until after Rads is ideal because there was a possibility the Tamox "calmed" the cancer and Rads wouldn't kill it. This has since been disproven in the newest studies...
I know you're not getting rads...but most women start rads within 5 weeks of ending chemo and take it for 33 txs which equals about 2 months...so after chemo they are actually starting about 3 1/2 MONTHS after last chemo tx.
I asked to start Tamox since I was delaying rads a little and because of everything, I feel this drug is the most important to my survival.
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Thanks Tonlee - we have missed you! How are your feeling/doing? I think they will begin whichever med pretty quick for me since I am not doing rads and have come through chemo relatively ok. The upcoming TE placement is my concern with the timing, but that surgery should be in the next few weeks if all goes ok in the meantime.
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specialk Congrats on ending the chemo! Now on to the healing and getting your mojo back!
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