Calling all TNs
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The view from my friend's Frank Lloyd Wright house in Sonoma Valley, CA where I am currently visiting. Now, if I could just stop *coughing*!
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beautiful!
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Beautiful!! So peacefull
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So beautiful and peaceful.
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Fabulous!
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Take me there Dear Lord!!! Stunning!
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Iwarstler, you are in a bit of a pickle. I think a second opinion is a good idea. Yes, herceptin is a magic bullet for HER+,BUT it still has SEs. Let us know how it turns out and what you decide.
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What a breathtaking view!
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What a beautiful picture!
I went to see my Onc today and I really just don't know how I feel about her now. Seemed today she was in a hurry! I had to ask about all my scans she didn't even mention them. ON my last visit 3 months ago she said she would rescan when I come back. Same thing she told me today! They did at least make the appt. I told her I haven't had a bone scan since dx and never had another muga or mri or anything other than a ct with contrast. So she did order another bone scan in 3 nonths and said I dont need another muga. But when I was first dx I was told I would have one after chemo was finished.
I have been having a pain around my knee for about a month. She looked at it felt it and said she didn't think it was anything to worry about. I told her I do have to sit with it bent at work and those days are the days it bothers me. So she brushed it off as that!
I asked about tumor markers she does them 1 year after chemo.
They did bloodwork so hoping and praying it all comes back good. I was running a small fever today, but I think that is from a horrible cough and allergies I am dealing with.
So now I am wondering if I should maybe ask for a different onc?
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KS - not a nice feeling to think you are rushed by your oncologist and that she's not paying enough attention. However, many of us do not have routine scans. I believe that finding mets "early" with a scan or "later" when you have symptoms has no affect on prognosis. I had a MUGA before chemo, but not after. I had CT and MRI before chemo but not after. I have not had ANY scans since tx except for a bone density scan. Nor does my onc do tumor markers. So although you may not be happy with what you are not getting, it is pretty standard.
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I get my last taxol treatment next Monday. I haven't even seen an RO yet. I have been reading up on radiology on this site. There are so many different ones and different time-frames. Is there any standard for TN? I had a lumpectomy so was told I had to have radiation. I am scared because it is on my left side, and my tumor was close to my chest wall - the BS had to go into the muscle of my chest wall to get clean margins. So, I am really worried about damage to my heart and lung. Any advice for TN or questions to ask when I get a first appointment would be appreciated. I also don't know when I get the port out which scares me since my lung was nicked with putting it in. Do I get to be put completely out to have it taken out? I stress over anything that they want to do under "local" only as they don't work for me. Just trying to think of my next steps after the horrible taxol is done. I have been just dragging through the treatments and worried about long-term neuropathy as I have it pretty bad in my feet and fingers. I keep wondering if I will ever be back to my previous healthy, active self ever again..... one where I exercise frequently, work full time and have lots of volunteering I did. Seems like a dream now since I can barely get off the couch, have pain/numbness in my feet and fingers, and can barely work part-time. I want this nightmare to be OVER. Sorry, I started with one question about radiation, then ended up venting.
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KS It has been a running joke (not!) with my husband and me that every single doctor says,"Don't worry about it," to nearly all my questions. If I'm sitting up on the exam table I'm tempted to kick them where I would get their attention. I'm sure they see lots of scared women asking the same questions, but they shouldn't dismiss us as histerical broads.
I've been getting lots of follow-up testing: multiple PET/CT scans, xrays, unltrasounds, mammograms. I'm starting to wonder if it is because my cancer center owns all that technology and needs to pay for it. I start (mentally) planning my funeral for a week before test until I hear a good result. So far,so good.
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cat they took my port out in office, kinda same technique as getting a tooth pulled. most dr"s want port left in for a year at least.
thank u ladies for your input
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Catwhispurrer- I had my port taken out with local and did fine, but they offered to knock me out with the same stuff they did when they put it in. So tell them that you want to be out for the procedure. They should have no problem with that. As for the radiation: I have one boost left and I am happy with my decision to go ahead with it. My tumor was also on my left side and I had a mx and still went ahead with the rads. I had 33 treatments, 28 whole breast and 5 boosts. I asked a question on here whether I should go ahead with it and with the help of all the ladies (THanks Ladies) I made the decision that I should. THey helped me realize that we have to hit it with the big guns the first time.
Lisadi1963- I had 12 weekly taxol then 4 AC and it did get worse. I had the old schedule of A/C, once every 3 weeks not dose dense like you are having. I didn't want to finish it, it was hard, but I am so glad I did finish. You will get through it! Heck, you only have 3 more. you're almost there!
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I never had another muga scan either...not sure why..maybe I should ask? I go to the cleveland clinic and they have the onc "assistants"...I refuse to go to them..sorry..but I want MY ONC..that has been with me since the start...He said he is always available for questions but that is not the same...I realize that these people need to see patients to learn but I just won't do it...I want my guy that has had years of bc experience...I just can't take the chance....no one complains when I explain that sorry I want "my onc"...I guess they have to ask...
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Hi Cat - Sorry that Taxol wasn't kind to you. My 12 treatments were a breeze, especially after AC treatments. The minimal neuropathy that I had towards the end is now gone, so hopefully yours will disappear also. Regarding radiation, ask if your center does it in the prone (face down) position. This minimizes exposure to the heart and lungs. Not all centers have the equipment to do this, but if you are concerned and have choices of where you can go, that is something to consider. Studies have shown that radiation dramatically reduces recurrence, so the benefits really outweigh the risks.
Regarding port removal, it is normally done under local, which they inject around the port site until you are numb. In my area, they believe in getting it out as soon as it is no longer needed, since it is a potential source of infection and prevents you from having any dental work until it is out, and also avoids you having to return to the center to have it flushed. All the best to you!
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Thank you all for the warm welcome. It is nice to find a group of ladies that understands things and I can bounce ideas off of. I was wondering if anyone can comment if they have flown with their port still in? My family is planning a trip for when I am done with rads and I wasn't sure if it is possible to fly with this thing in. Thoughts?
Thanks!
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My port was removed a couple weeks after I had a clean PET scan, which came two weeks after I finished chemo. Keeping the port for a long time must be one of those regional differences. It seems kind of silly when not everyone is required to have it, to begin with.
I have a follow-up appt with my MO tomorrow. I am not expecting any surprises, although I'll feel better when I get the results of the CA 27.29 test, which probably won't be ready before next Monday.
My birthday is Saturday. Last year at this time, I didn't think I'd be around to celebrate this year's birthday. Instead, here I am, in relatively good shape, and looking forward to partying on Saturday with my children and grandchildren. I've actually not ever celebrated my birthday with my grandkids because we always lived so far away. This really will be a beautiful birthday celebration! Yes, indeed!
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I went to get my eyes checked out this afternoon and was told I have the beginnings of cataracts in both eyes, and we may need to do something about it in a couple of years (or so) depending how they progress. The doc asked me had I had steroids as they can sometimes be a contributing factor. Not necessarily blaming the steroids, but wondered if anyone else had heard of this. I am 57, so definitely on the young end for cataracts.
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LuvRving - that sounds like a wonderful birthday celebration!
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Titan - I too want my oncologist that has been with me all through this. She was great and was so onto things. I saw the new oncologists registrar last time and was not a happy camper. God knows where he was but he didn't show his face to me. I want someone I can trust to do the best for me and my first oncologist was so on the ball and has a real interest in TN cancer so I have asked if I can travel outside the area and still keep seeing her. I want and and deserve the best treatment there is and she is it.
To all those ladies wondering about scans I don't think they don't want to do anymore than is necessary as they will be exposing a patient to perhaps unnecessary radiation. I am happy with this as I don't like the scans anyway. Too much freaking out waiting for results for me so as long as I feel well I don't want them
Can anyone tell me basically what problems apart from the tingling and neuropathy they have had with Taxol. I am to have 12 weekly sessions and I am already worried about it even though I have two weeks to go (typical me, worry wart). Is there any nausea or vomiting? What meds you need to take etc.
Thanks for all your help. Have a great, stress free, worry free and happy day ladies. Annie
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Oh and LuvRVing - you have a great birthday celebration and yes you will be around to have another next year. In the meantime enjoy this one with your grandchildren. Hugs. Annie
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RV - have a wonderful time!
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LuvRVing - happy birthday early. Hope you enjoy spending your special day with your grandkids!
Mine is on Thursday (the 26th) and I'm taking my 12year-old daughter to Montreal for the weekend to celebrate. Can't wait! I'm taking her out of school on Friday and we're flying there for three days/two nights. I'll be 48.
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Thanks, Fighter - it's a real roller coaster ride lately!
Lwarstler, IDK - It is so hard for us to make these decisions under such pressure. I would be so upset that the time wasn't known - why test for HER2 if they are going to screw up the test? How often are false positives an issue? If you feel uncertain about it, I would get a second opinion. And if you are still uncertain, get a third - nothing wrong with that.
Tina, You will get back there, I promise - I had eight months total of chemo that ended in Feb and realized today that 1 - I had a pair of "almost" dress shoes on and my feet felt okay, and 2- I got up from my table at the restaurant and even though my feet hurt at first, I could conceal the "hobbling" and walk normally through the first few seconds of pain. I couldn't do either about a month ago. i work long days and some days I'm still worn out but other days not so bad. A month ago, the days I had any field work in my job made me very tired - now I can do the field work and go back to my office without being drained. I'm also trying to get back into a routine of walking and walking/jogging - I did really well until last week when I had to work extra all week and weekend. I walked over an hour Sunday and hope to go again tomorrow.
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Enjoy your Birthday celebration, RV!! nd you too, Sugar!
Wish: I flew several times with port/TEs/ and a scarf on my head. No problems with security or the body scanner thingy. At one airport-I think it was Tampa, I had a female TSA agent that had to do a pat down on me. She quietly advised me that she would be touching my scarf and my head. When she was done she leaned in and whispered in my ear "good luck, honey" I also wear a sleeve on my arm to try to prevent LE. Talk to your BS or PS and they can right a script for the sleeve and insurance should cover a portion or even all of it. Make sure you get measured properly for a good fit.
Gilly: Yep, I am on the road to cataracts, too. I am 52! I already have an appointment to see an eye surgeon for surgery consultation but not until September. I absolutely dread the thought of another surgery!
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Sugar: Have a great time in Montreal. What a nice thing to do with your daughter!
Cocker: With taxol, I had some nails go black (and eventually come off). And my hair started growing back, that was a good thing!
Re scans, I had a MUGA after chemo - I guess to see what damage the AC might have caused. There was no change in my result. I have only ever had scans when a symptom popped up. Personally I would not want PETs and CTs all the time... it's not only the anxiety, but the radiation mounts up. Most research indicates that recurrences present at intervals anyway... and there is no difference in outcome.
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Teka - my Mum has has cataract surgery in one eye - but she was about 75 when she had it.
Navy - any idea why you are on the road to cataracts so young? Yes, surgery seems like a horrible prospect. BUT, on the bright side, your eyesight will improve. (Don't know if you need it?) My eyesight is shockingly poor.
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Cocker, no nausea or vomiting for me, just pain, numbness, tingling in arms, hands, legs, feet.
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wishn, I flew between the end of chemo and my surgery with my port in place, and as NavyMom says, they were more interested in my head covering than my port. One lady did ask me to remove my covering and I got a little teary. As soon as she saw my stubble, she quickly told me it was OK and apologized.
And I asked for my port to be taken out after I was done with treatment and they quickly agreed. I asked them when they would have brought it up if I hadn't, and I got quick "assurances" that the port could stay in for years. So, good thing I said something or I might still be waiting for it to be taken out!
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