Calling all TNs
Comments
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Hey Gina...welcome...! wow..new format...I may like it...once I get used to it...I like that it is bigger and easier to read...like you said Cocker..old dog learning new tricks..we can do it! we can do anything..lol
I have to admit..the Cleveland Clinic is pretty good about getting results back quickly. I just think that with us..quickly is not good enough..I want to know NOW...
When I had that first "bad" mammo and ultrasound..I said..could it be a cyst..and the tech practically screamed at me that it was NOT A CYST...dang..then I sat in this darkened room while they made appts with the bs for a biopsy..they were like when can you see him and I was sitting there huddled up..saying I don't care, I don't care....I just don't like this...the waiting for anything just sucks..and we all have felt the pain...
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Painting..your dinner sounds wonderful...I have a recipe for kale chips...I've heard that beer is good with them!
One thing I would like on this posting thing is that I could scroll up or go to another page while I'm posting....I want to talk to everyone but sometimes I forget things and I can't go to the next page to find out what you all have posted...is there a way to do this that I don't know about?
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becca...hope you are feeling better soon..I hate that you are dealing with nasty se's...
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Haven't checked in for several days. My ANC was up when I went for infusion yesterday. Back to normal, so I had my first infusion of my fourth treatment. I will have the second next week......taking Cytoxan by oral meds for 14 days, and the Methatrexrate & 5FU by infusions. Got a call the day before my mammogram on remaining breast to tell me it was scheduled one month too early, and also I needed to have an MRI scheduled the same day........so all of that is June 5th.
Lost a dear friend last Friday to inoperable lung cancer.....eight days after the diagnosis. She is one who has probably called me more since my BC diagnosis in December...just checking on me after every treatment. Such a dear friend. I believe the Lord was benevolent to her, because she had been suffering with COPD and then congestive heart failure. What was ahead for her was not good. Her dear husband of 55 years is grieving, but as a believer, he knows she's in a better place, and now breathing without the 24/7 oxygen.
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Merrinell, so sorry for the loss of your friend. Sending my prayers to you.
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Thanks everyone, I think they may let me go home tomorrow. I think my day nurse was a little surprised this afternoon when she came into the room in a bit of a rush,and the VP of the hospital was sitting here just chatting. Day nurse slowed her a&& down and followed the time out and 2 forms of ID here giving meds.
I still hate cancer, but life is good when I can get a laugh out of that nurse's reactions.
Becca0 -
Give 'em hell!
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We'll be there with you, Teka. Wishing you all the best, and give em' hell if they start any crap with you! Rest easy tonight.
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Had Taxol 10/12 today, only 2 more to go. The best thing that happened to me today was getting approval to have my picc line removed on day of my last chemo, a real shower minus plastic wrap and help from my DH, swimming, a dunk in a hot tub upto the shoulders, a real full body massage, steam room, here I come. Can't believe all things I had to miss out on cause of the picc line!
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Teka, praying for good results tomorrow morning.
Titan - I think we all have that problem of writing our posts and then trying to go back to see something but can't. It doesn't allow us to go back.
Luah - I totally agree with you and as soon as I saw this format, I thought what a waste of half the screen of space. The more people try to change things, the worst things get in the world. Sometimes you wonder why they change good things, why, why and why?
Fighter - Welcome back!
Becca - Are you admitted to the hospital for the night or just for several hours until things get back to normal? That sucks! I am sure you want to go home dear! Your spirits are wonderful, keep it up Girl! I hope things level off pretty fast and you get out of there.
Sagina - Welcome to this board, these ladies are wonderful here!
Kathyrnn - I went through authorization processes with my insurance co. to get the BRCA tests done. My hospital BRCA counselor wrote wonderful letters on my behalf insisting why I was a good candidate for the test. One reason was having TN. However, they denied it the first time. On reason was I had no family history except a cousin who I share only 7% of the genes with. Then I found out that I had another cousin somewhere in the world who had some sort of cancer, either ovarian or stomach. This was enough for my counselor to send another authorization a second time, using the insurance co's rules and hoisting them "onto their own petard" which was if 2 people had cancer in the family, then they would authorize the tests. Lo and behold they approved it the second time without hesitation, and paid for it almost 100%. I think I paid a tiny little amount such as $35. My result was inconclusive on BRCA 2. Negative on BRCA 1. I am writing this from memory, so am not sure if the tests were called BRCA 1 & 2 or something else. Once more research is done on the type of gene which was inconclusive, I will hear back from the Utah testing place. In my case, since I am Indian, and most of the information they have in the database comes from caucasians, they did not have enough research on my genetic history.
Painting - the galleries are lukcy to be representing you. Enjoy! Don't even give the mammo a single thought, it will come out all fine.
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Hi Ladies.
Merrinnell - so sorry to hear about the loss of your dear friend but glad she is in a better place and doesn't have to have more treatment.
Becca - hope you feel better soon. Sending lots of big hugs.
Titan - I also forget what is said in posts and appreciated being able to scroll and catch up. Don't like the big wide margin either, waste of space.
OBXK - thank god for your good blood work. Don't forget to get plenty of rest and not overdo things.
Lovelyface - great news about your mum. Things are looking up for you.
Well ladies its crying day again. Went for my first taxol. Had the saline no probs, had the dexamethazine, no probs. Then came the taxol. As soon as it went in I got all this funny floating bits in my vision. Then my face felt like it was a balloon and my heart was pounding, then my heart started racing. Called to oncology nurse who turned off the machine and told me how to breath. It was just so scary. Took a while to come right but I was so scared. The oncology nurse thought it was an anxiety attack but I think my BP went too low as when he took it after the attack it was perfect and I haven't had perfect BP for years, it has always been high. Anyway he said he wanted me to take a Diazepam and then give it another go as he was frightened I wouldn't go back next Wednesday. How right he was becoming. Anyway took the diazepam and then later had the taxol again and apart from some palpitations it was ok but what is it going to be like next Wednesday. I am also dreading side effects. Wasn't hungry at all for dinner tonight. Sorry for the long post and to cap it all off it's bloody raining. What a day.
Hugs to everyone waiting for results, to all those not feeling well or feeling tired or just plain worried. Thinking of you all. Annie
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So sorry you had to go through what you did with the Taxol, Cocker Spaniel, but I know only too well what anxiety can do to us. It's a real bit$h. Ask them about taking an ativan or xanax prior to your next one. I too was really anxious about dying from the damn crap when I got it, with all I read about the allergic reactions, etc., but mine went fine. Side effects from it sucked big time, I found it was far worse for me than the A/C, but I was not normal in any of my side-effects, so don't let me scare you. If it could happen, I got it, but worked through it all and better still, lived through it all! Congrats on getting the first under your belt. Hope the next one is easier and your side-effects are minimal.
Linda
Teka: Can you feel us encircling you?????????
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Lovely face, I was admitted late Monday/early Tuesday and will be staying until sometime this afternoon. That is if I do not spoke another fever.
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Lovely face, I was admitted late Monday/early Tuesday and will be staying until sometime this afternoon. That is if I do not spoke another fever.
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Hmmm...not sure I like this format either but I always adjust slowly to change. I'll have to try it out on my smart phone.
Annie, you can do this! I always had Ativan with my infusion, much to my daughter's dismay because it makes me kind of goofy and irritating to be around - but I don't take it any other times, so it gave me something to almost look forward to when I got my chemo. The combination of all three of the drugs did give me some of those symptoms - I had what seemed to be increased floaters, water retention, muscle aches, etc. The taxane drugs were a big help in fighting breast cancer - if you look at some of the studies for outcomes pre and post taxanes it really made a difference. So hang in there!
Teka, hoping everything turns out fine today!
Beccad, I'm sorry you are in the hospital and hope you get out this afternoon. I met a lady at chemo last year who had a triple negative recurrence and the gemcitabine knocked the FC to the curb so hoping for the same for you!
Sagina, a big welcome to you! I eat fish and shellfish, but no chicken or other meats. I am still struggling with sugar, though, although I have reduced consumption by at least 3/4.
Merrinel, I am so sorry for the loss of your dear friend.
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I think it will take me a while to get used to this format....not sure I like it.
Beccad - Hope you're feeling better.
Teka - Thinking of you today. Hang in there.
Cocker_Spaniel - Sorry you had a hard time with your first Taxol. Anxiety has been my constant companion since BC entered my life. Meds really help. Congrats on getting the first one over with! Hoping your side effects, if any, will be mild. I had a much easier time with Taxol than A/C and hope your experience will be the same.
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CS- Did they give you the Benadryl infusion before the Taxol? If you did get it, maybe that's what made you feel bad. I did not react well to the Benadryl infusion. As soon as the drip started, I started feeling dizzy, hot and my arm (the one used for infusion) started to hurt from the needle and up. For me the Benadryl was worse then the Taxol itself! That is why I was happy to know I could take Claritin instead, 30 minutes before the Taxol. You can do this. Take care and rest well.
Big Hugs.xx
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Suga- my front yard looks amazing. It took hardwork, but I was determined to get it done. I was inspired by our angels as well as resting in paradise. I miss them they answered questions so open and honest all the way until.
The new format does seem more functional but less practical. I hope I am making sense. It would have been nice to update the picture function as I find it too cubersome to use.
Last week I made it through another 3 month check-up. I get so nervous and up tight around check-up time. I don't think that will ever change I'll just adjust and find a way of coping with it.
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Babs37- how are you doing on the study now? have things subsided? best wishes.
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Beccad-sending gentle hugs and wishing you a speedy recovery.
Christina- what are floaters if you don't mind me asking??
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Wow CS - that is scary, glad they got it under control and I hope you have minimal SE this round!
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Yeah! I told you, Teka, I just felt it that you were going to be fine. Still so sorry that you had to endure all the rudeness and frustration prior to getting these good results. Celebrate!!!!!!!
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Tomorrow morning is my double mastectomy and my anxiety is off the charts. So worried about lymph nodes. I freakin' hate cancer!
Sally
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Yeah Teka! So happy for you.
Clowngirl- Sending you good vibes for tomorrow. Big hugs. And I hate freakin cancer too!!!
Fighter- I feel things have "settled down" a bit now with the Metformin. I had a little scare this past november because I was having twinges in my liver but didn't know if it was from the Metformin or something else so I asked for an abdominal scan and it came back clear for mets but they thought they saw "fatty liver disease". So made me go for a abdominal US. When i finally got my US in march, nothing showed. Not even fatty liver spots. So all is good for now. I 'm continuing with my dosage of 850mg X 2 a day. I think it just took a long time for my body to adjust.
Wishing everyone a good day. xx
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Bad bad news - it is indeed a local recurrence of the cancer. Hard to believe that after a lumpectomy, 5 months of brutal chemo, and a mastectomy there were still enough stinking effing cancer cells around to make a new tumor 3 years later. I hate this so much. I have been sobbing non stop.
I have an breast MRI tomorrow. Then hopefully surgery as soon as they can schedule it, followed by rads.
Does anyone know - does this mean my previous chemo regimen (AC/Taxol) would be considered ineffective on my particalar cancer?
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Damn, minxie, I am so very sorry to hear this.
I guess a silver lining is that it's a local recurrence... and it's been 3 years... the longer the better with TN and that's quite long. Still, it just sucks that you're facing this again. I'm afraid I can't help with the chemo questions - hopefully others will be along shortly, and you will get good advice from your onc... in the meantime, just want to send you a big cyber-hug.
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Sorry guys, I'm loving the new format, but you may be right that it's smartphone friendly, because that's what I post from.
Teka - Yay on your results. Also wanted to comment on something you said, "Nurse called this afternoon and sounded like I had shamed MO and CC by having to beg for test results". Sounds like you did exactly what needed to be done. Well done!!!!
Sagina- welcome, you will find both great info and support here.
LRM216- you are absolutely right, they need to walk in our shoes. I also have the same problem with pain management specialists. You guys spend some time in soul sucking pain, and then you can tell me all about what I should be doing!
Painting- sorry about your friend and congrats on the two new galleries.
Sugar77 - I love the idea of memorial plants! What a wonderful thing to do.
Titan - so sorry you had such a bad experience on your bad mammo. I was lucky to have the opposite. In 3 hours I went from mammo, to ultrasound, and then to biopsy. The doctor who did the biopsy, couldn't give me results but she told me that since I was a nurse, she knew I knew how serious this was, and to prepare myself that it would probably not be good news. When I got called into my doctor's office, I was able to make it easier for all of them, by telling them I already knew it was bad news, but now what are we going to do. I knew it killed them to give me the news, (I've been with them for 20 years). My doctor came in on his day off, just to meet with me as soon as he got the results. All I did was tell them who and where I wanted (I started doing my research as soon as they did the biopsy). My NP told me to go home, she would handle everything. She called the next afternoon and had the BS I wanted and a team in place that would meet with me in 5 days. We ALL, should get that kind of care and concern!!
Merrinell - very sorry about your friend but I'm glad it was merciful. I have a friend just diagnosed with Stage 4 lung, and I fear the doctors are not giving her the honesty she needs.
Beccad, as a nurse, I really laughed at her comeuppance! We nurses often need a wake up b**chslap!
Naan1004 - congrats on getting the PICC out, but a quick ? Are you having radiation. If you are...RUN to the pool and hot tub. You won't be able to do them during radiation.
Lovelyface - there is no question on the approval of the test, I brought the exact criteria from my insurance company to the genetic counselor. The problem is they should be paying 100% of the cost and have decided to only pay 50%. They have the right to set a fee, based on a reasonable amount for the same service. This being the only lab helps me. There is no other service provider for them to compare against and set a fee, so it proves they are just choosing an arbitrary fee.
Clowngirl- I'll be praying for you tomorrow and sending positive thoughts.
Cocker - one thing in your post concerned me. You said you "called for your oncology nurse". How far away was she? They are supposed to be watching like a hawk on the first Taxol, and very closely on #2 & 3. The only reason my nurse left the room for a brief period on the first one, was the friend I had with me was a nurse (I've seen a friend have a severe reaction to Taxol many years ago, I brought a nurse with me for my first 3). Please make sure you have someone with you during your treatments and they know what to be watching for and can grab the nurse if necessary. It was over 15 years ago, and the two things I remember was she began to wheeze and become short of breath and she began to turn red very dramatically. The best way to describe it, is like the red mercury in an old fashioned thermometer. I could see her chest become bright red and begin climbing up her neck to her face. It's very dramatic when you see her. The sad thing was she wasn't in a cancer facility, and the doctor didn't recognize the symptoms ( and she should have, my friend had already had a reaction the first time they gave it, that's why my friend wouldn't try it the second time unless I promised to be in the room with her). I literally had to tell the doctor to stop the infusion, or I would pull the IV out myself.
Please make sure you have a friend or family member with you!0 -
((((((((((Minxie))))))))) Sorry to hear that you had a local recurrence. I am not sure about the chemo piece either. I guess you'll have to ask your MO. Did it come back in the other breast or where you had the mastectomy? Thinking of you xoxo
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((((Minxie)))) I just hate to hear this!!! DAMN!
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(((Minxie))), so sorry you have to deal with this crap again.
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