Calling all TNs
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Luv - same here. I feel like it is what it is. We made the best decisions we could at the time with the information we had. We have to trust in that and trust in the doctors. They talk like TNBC overall survival is terrible, but in reality it's not. Compared to other types, it's marginally not as good, but it's not as dismal as they make it out to be. I also think there are so many studies out there. You can find practically any study to support any topic...which is why I hesitate to post small scale studies. Sending you love and hugs. We're going to be okay. The odds are in our favor.
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I guess this is where I belong. I'm thankful for finding this thread, and I've been reading it obsessively for the last couple of weeks. I'll explain a little bit about myself by way of introduction. I've cross-posted this on the March 2016 chemo thread, but some of my questions may be answered by the ladies here.
I'm 56, and married for 37 years to my best friend. Our daughter, Tami, was diagnosed in 2012 at age 32 with Stage IV IBC (ER+,PR+,HER2-), no family history of breast cancer and very active and healthy. She lost her battle last November when it overwhelmed her liver. Then 2 months later I was diagnosed, but a completely different profile than hers. Mine is IDC, Stage 1a, and triple-negative.
After seeing the battle up close, I'm treating my cancer aggressively, because I want no regrets. I had my SLNB & BMX two weeks ago, with wide margins and no node involvement, no need for radiation. (finally some good news) I will start Chemo in March, just waiting on scheduling for my start date. My MO has prescribed Taxotere & Cytoxan (TC) every 3 weeks for 6 rounds, and then I'm done.
Because all my research had been concentrated on my daughter's profile, I had to start completely over. I'm very much at peace with the decisions I've made so far, but have a few questions for everyone here:
1. Port or No Port: How hard is CT on the veins? Since I had SLNB on the left, I can only use the right side. Tami resisted a port for her first go-round with AC/T, and it shredded her veins. When she had to return to IV chemo again, she did get a port, and regretted not getting it earlier. However, she was basically going to be on Chemo forever. In my case (hopefully), it's 6 rounds and then I'm done.
2. My MO has prescribed Xarxio - which is a newly approved 'biosimilar' form of Neupogen. Looks to be a pre-loaded syringes that I'm to inject starting 24 hours after chemo for 6 days. I searched for the name here and didn't get any results, but wondered if anyone else has been using this? I'm going to assume that since it's similar to Neupogen, that taking Claritin may help with the bone pain.
3. I'm going to try icing my hands & feet to avoid neuropathy. I work in IT on the computer all day, and walk for my exercise. I've ordered one set of the mittens and slippers, and am going to see if I can create extra inserts to swap out, rather than buy more sets. I'll know more once I receive them and can 'see' how they work. Anyone have any idea how long the TC infusion generally takes?
I guess that's it for now, good luck everyone.
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WannaCruize… - Hi there - my condolences for the road you've been down with your daughter and the journey you are now on.
I am taking TC now myself and also work in IT. I was worried for the same reasons. My MO said that Taxotere (the T of TC) is not nearly as neuropathy-inducing as Taxol - the other T. I had the first full dose on 2/16, and while I've had all the normal side effects, I've had zero tingling, pins and needles or any issues with my hands or feet. Since chemo is cumulative, this may change, but so far so good. (I wore flip flops to the infusion room just to keep my feet a little cold - just in case...lol). The whole infusion process from pre-labs, pre-meds, to kicking me out the door was about 4 hours. I felt fine that day but was a little loopy from all the anti nausea and steroid stuff. I am guessing your Neupogen is the once-a-day equivalent to our time-released Neulasta - that's probably why you aren't finding it on here.
I chose a port. I have uncooperative veins when I don't feel good - and again, with the cumulative effects, I'm guessing my veins will become less cooperative over time. It was easy considering everything else that's been done.
Keep in touch.
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Welcome to all of our new ladies. Wow you go away for a short holiday and the thread gets so active.
LUV and Ally I had mastectomy surgery first before chemo and the first thing my surgeon, whom I trusted completely, said to me when I woke up from the anaesthetic was "I am confident I have given you an excellent margin". Because of my job I knew this was crucial to my outcome. I did have cancer in four nodes as well so all of my nodes were taken out hence the LE. I also had radiation because of the node involvement. I don't regret my mastectomy decision and I don't regret the radiation because I did what was necessary at the time. As you say Ally it is what it is and the odds are in our favour. I know girls that had positive receptors with no node involvement and early stages that have taken tamoxifen or arimidex and have still had recurrences. It is what it is and regret is pointless. I am not interested in the studies. They all paint pretty pictures of a cure being just around the corner but nothing seems to come of them or they are five years or more down the track. My mother and grandmother died of cancer all those years ago and still there is no cure only improvements in treatment. We need a cure now so what the hell are they doing with all the money that has been raised for scientific research. I will not read anything about recurrences because I feel it doesn't help at all. It stops us enjoying what time we have now and only brings more fear, and anxiety and messes with your head when we just don't need it, whether just diagnosed, half way through treatment or at the end of treatment. As you say Ally, we are going to be ok.
Well my little dog Tessa, my golden cocker spaniel, is not ok. She has been vomiting and had diarrhoea and now has a big swelling in her tummy. So we are off to the vets today. My mind keeps racing and I can't concentrate on anything with fear I may lose her. I absolutely adore that wee dog and the thought of losing her is terrifying. So please keep me and my Tessa in your prayers.
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Oh Cocker - your sweet Tessa is in my deepest prayers. Please, please keep us posted. xoxo
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Wannacruize,
I am also sorry to hear your story and sad that you've lost your daughter and now have to face this yourself (although a MUCH better set of stats, the earlier stage definitely a plus and TN can often be very responsive to chemo).
here is a site that may help you decide on port or no port. The drugs that are vesicants would be the hardest to have without a port but the two that you are set to get are listed as "irritants" so maybe not so bad: http://hemonc.org/wiki/Vesicant_%26_irritant_chemo...
I have had many rounds of chemo and will have many more so I am forever glad for my port, but you may not need to get one for only six.
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Cocker praying for you guys and sweet Tessa!! You're words are always soooo comforting!! Thank you!
WannaCruize I'm so sorry to hear about your daughter. (((((HUGS)))))! I would go for the port if I were you. They're a bit uncomfortable at first, but it saves your veins! Keep us posted on how you do. Sorry you have to be here but it's a great place!!
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Cocker Spaniel...I read your post with mixed emotions. Encouraged that you are five years out from your initial diagnosis...BUT, sad to read about your beloved dog. Hoping to read tomorrow that all is well with her.
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I took neupogen during my first round and took Claritan. Had no pain whatsoever. Took one shot of neulasta last time and had two days of "don't even touch me" muscle pain, even with the Claritan.
Hoping Tessa is okay.
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Amy what allydp says is so true. We make the best decisions with what info we have at the time and put our trust in out teams to carry us safely in their hands. I too agonized about my surgery decision. A lot of my tumor was removed at my biopsy before I even saw a surgeon or knew I was tn. I was brca negative and still was conflicted about bmx or lx. My cancer was small at 9mm and node negative. I still question if I did the right thing by keeping my breasts as a tn. I see so many of us tn gals do mx or bmx and few do lx I do feel better knowing I have had an extra layer of treatment with rads, but lx plus rads is as effective as mx. Please ease your mind and you will know your decision. Prayers for you my friend
Cocker my heart goes out to you and your fur baby.
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Wannacruize, Welcome. And my condolences for your loss of your daughter. So sorry for your diagnosis, especially so soon after such a loss. I hope you get much comfort, support and information here. As for the port...I think you will be more comfortable with it in the long run, and it is one less thing to sorry about. I really hate needles, got much better about it being stuck all the time during treatment, but I love my port. (Still have it).
Cocker, so hoping things with Tessa are better. Update us when you can.
Hugs to all the newbies, the not so newbies...and everyone!
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Took my wee Tessa for her scan today and I have never hated cancer so much in all my life. She has cancer in her liver, kidneys and spleen. There is nothing they can do for her but as she is still eating relatively well and enjoying short walks I did not feel that today was THE day. The vet agreed and said take her home and enjoy her for the time you have left, you will know when its time. If she starts vomiting again, I have her on chicken and rice or chicken and pasta and veges, then that will be the time. Its breaking my heart. I love her so much and just cannot think of a time without her. She is by my side all the time and I'm watching her like a hawk but I'm blinded by tears every time I think of what will soon come. If you can't pray for me then please pray for my girl Tessa.
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Cocker I am so sorry to hear about Tessa. I will definitely keep you and her in my prayers! I can't find the right words right now. I will say DAMN CANCER though! Sending you and Tessa a big tight hug with tears in my eyes! So sorry
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Cocker: *MASSIVE HUGS* to you and Tessa!
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Oh Cocker
I'm so so sorry. Your sweet Tessa.
Prayers for her & you as you spend time together. Our animals are such blessings to us & from what you have shared,Tessa is a true gift from above.
My thoughts & prayers are with you.
G
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Oh Cocker,
So sorry to hear about your sweet Tessa. It is so sad that our little four footed folk get this Cancer Crap too. They don't know why they hurt. Lost my four footed fur baby little over a year ago. I knew it was Cancer as she was fine but lost weight fast. Then one day, I knew. She died in my lap & I miss her all the time. My prayers for you both. She will be waiting for you to join her again. Just don't plan on joining her soon.
Hugs to you, & light belly rubs to Tessa.
Marsha
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Oh Cocker, Words cannot tell how sad I feel for you. I feel your broken heart and fear. As your have read above, you have all our love, support, understanding, and warm hugs. May the next few days bring you strength as you prepare to let go. My love, Jan
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Cocker-Spaniel - I am so sorry about your Tessa. I lost our French Bulldog about a year and a half ago. He had cancer. He was so much my husband's dog who passed away from lung cancer 9 years ago next month. I have another dog, a Springer Spaniel, who has a malignant growth in his jawbone. To operate they would have to take out part of his jawbone. I really do not have that kind of money and he is going on 12 years old and has bad arthritis in his back end. He takes Rimadyl twice a day and does not seem to be in pain. He still eats okay. Our pets are really part of the family. Prayers going your way.
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Oh Cocker, I am so sorry for your little Tessa. I am praying for her and for you. DAMN CANCER TO HELL! Our innocent furry children should never suffer.
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Cocker it just doesn't seem to make sense that our Creator created our "best friends" with so much shorter life spans than ours. Why can't they just be born when we're born and come with us when we pass? But I guess we won't have clarity on that until the next life (where I DO believe we will see them again). As for right now, know that you have many many friends out here in cyber space who feel so deeply for you at this time and are praying for both you and Tessa. Enjoy your time together. Have a cheeseburger party for her if she can tolerate it. Much love!
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Cocker, losing a pet is one of the saddest, hardest things in life. My thoughts are with you.0
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WannaCruize - welcome. I'm so incredibly sorry to hear about the loss of your daughter. I'm sure being diagnosed yourself brings up certain feelings again and which is such an unfair double whammy. You're certainly in the right place as this is a wonderful group. I'm glad to hear you caught your tumor early. We're here for you.
Cocker - I'm in tears for you and wish we could all give you a massive group hug right now. Our fur babies get us through everything and are our constant companions, though thick and thin. Try to enjoy the time left with your sweet Tessa. You and she will be in my constant prayers. Love and hugs to you both. xoxo
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It is heartbreaking, Cocker. SO SORRY. Our pets are such a comfort, they give us so much. I am tearfully typing these words. Like every said above, we are all supporting you. I am in on Ally's group hug.
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Oh Cocker,
I am so sorry to hear about Tessa. Hugs and prayers to you. May Tessa stay comfortable with your love.
Hugs
Arlene
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Thank you all so much for your posts, love and kind words they mean everything to me. I wish life could be just as Mike said and the dogs are born at the same time and then we take them with us when we go, but just wishful thinking on my part. Today she is restless and loves laying on the cool cobbles but never two feet away from me but she is still eating small dinners so I'm taking that as a good sign. She doesn't seem in pain thankfully. Once again thank you so much. Love you all too. xx
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Dear Cocker
So sorry to hear the news of Tessa's cancer. I have always enjoyed your stories about what a rascal she could be. Anyone who has ever had a Pet can understand what you are going through. I lost a beloved black lab 28 years ago and can still remember the pain when she got sick. Sending you sweet hugs and a cyber dog treat for dear Tessa.
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Cocker- I'm so sorry about your pup. I know this is heartbreaking. I have a cat who has an inoperable mass in his head. We can't determine if it is cancer or a walled off infection, but it's devastating. I hope you both enjoy the time you have left together
Wannacruize- cancer is such a cruel &$@©%! I'm so sorry about your daughter and now your dx. I vote for the port. Having it put in is a very easy procedure. I think the chemo would be very hard on your veins. Plus if you have a port and need vein access for other reasons, you know that you have accessible, uncompromised veins.
I came home from DIEP flap on Monday. Recovery is going well!
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Cocker- I'm so sorry about your pup. I know this is heartbreaking. I have a cat who has an inoperable mass in his head. We can't determine if it is cancer or a walled off infection, but it's devastating. I hope you both enjoy the time you have left together
Wannacruize- cancer is such a cruel &$@©%! I'm so sorry about your daughter and now your dx. I vote for the port. Having it put in is a very easy procedure. I think the chemo would be very hard on your veins. Plus if you have a port and need vein access for other reasons, you know that you have accessible, uncompromised veins.
I came home from DIEP flap on Monday. Recovery is going well!
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enjoy her while you can, Cocker. Then slowly the good memories will fill in to take the place of your sadness. It is so hard, I know.
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Wannacruize, - I am so sorry for your loss, and for now having to face this yourself. You have joined a good group. We will always be here for you for support.
Cocker, - Enjoy your pup, and know that you've provided such a loving home and family for her. She is very fortunate to belong to you!!
hugs to all here
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