Calling all TNs
Comments
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Iwarstler- I am not sure what I would do. My mo wants to put me on herceptin because it has been shown to be effective in low her 2 positive patients and mine was a +1, so I guess I would consider taking it because there are studies suggesting it to be a benefit to some her 2 neg. Did they give you a score with your her2, like +1 or +2? I guess since they made a mistake it wouldn.t really matter. There is a study that is having her 2 neg (+1 and +2) patients get herceptin.
I am in the grey area for everything it seems, A little er positive, a little her 3 pos, kinda stage 4 but not really. Seems like there are no definitive answers.
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Happy Early Birthday RV and Sugar!!
Had alot to catch up on so forget who asked what
I just flew with my port in, no problems whatsoever. I also got the pat down, poor woman was terrified of hurting me after I showed her my port.
Don't know if this helps or not but it was just another piece of advice given to me. I was terrified on neuropathy and my aunt who is a occupational therapist said to always try to keep good blood flow to those areas of concern. Every morning since she said that I take a little lotion and massage my feet really well. Tomorrow I'll be 7 months PFC and only have my big toe on my port side seems to be numb everynow and then. I had taxotere, not taxol.
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Ladies what's a MUGA Scan??? I have only had a chest x-ray prior to the Merformin study.
KMatthews-that's a biggie for me. I don't like to be pushed aside. You don't have to be rude but do voice your concern that if it is important to have the follow-up care then engage me when I am having the follow-up care. I learned that early on to be push but not rude when it comes to ME.
Sending warm sunshine thoughts everyone's way....
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Catwhisperer - when I read your post, I thought I wrote it! That's exactly how I feel. You and I seem to have the same dx and seem to be at the same stage of treatment. I have my last Taxol tomorrow and I was wondering the same thing about this stupid port. I'd love to have it out on Friday. I'm getting a mammogram on 4/30, meet with RO on 5/4 to get tattoos and get my radiation schedule. I'm starting to get nervous.0
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Fighter: a MUGA scan measures heart function. It's generally done before AC or herceptin as they are both hard on the heart, and would be contra-indicated if heart function were poor.
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Fighter, a MUGA scan is a scan to check your heart since the A part of AC can be damaging. I had one prior to treatment but not after. Why did you have a chest xray before Metformin? I'm on it now and didn't.
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Riley and NavyMom thank you for your reply about flying with a port. I never considered that my head scarf would be a problem and possibly searched. Thank you for the heads up about that! Maybe by the time we actually fly I will have some hair again. I do have the tiniest bit of white fuzz coming in and I am 4 weeks out from the last dose of Taxol. The only lingering effect I still seem to have besides my hair is some nueropathy in my hands. I am still taking seizure meds to help with the pains. Hope that starts to go away soon too.
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I am just so surprised at all the differerent protocols for us all! I hate having the scans, but when I hear all clear it really helps ease my mind. I guess I should really trust her and just go with my gut feeling. Thank you all for responding to me about this.
I wish you all a fabulous day!
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good morning ladies!!
hope everyone is doing well!!
xxoo
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Ksmatthews - i am too - I guess that isn't a bad thing because everyone is different and every doctor does things thier own way. Guess that is cool as long as I kick it to the curb!
Hope everyone has a good day with minimal SE!
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I'm surprised I don't get scanned either. I also think a little of it has to do with the insurance companies, if they will pay for the scans the dr will order them, if not, you won't get them.
As far as my Onc, all of my appts have been with both his assistant first, who I just love. Then he'll come in. They are both very good at answering my questions but I find that his assistant communicates the answers better to me. I love Dr. Lobo but sometimes he unintentionally speaks a little above my level and I get lost. Julie tends to catch onto that and translates for me. I find the pair of them to be a better source of comfort to me, especially since I'm usually having anxiety.
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CharB - I don't even have an appointment with an RO and my last taxol is Monday. What kind of radiation treatment are you getting? How was that decided amongst all the different options? Maybe I will call today and ask for an appointment as I want to keep this treatment moving along. Everyone mentions "tatoos." Are they permanent? If so, I don't want them. I don't want to have something permanent marking me up even more than the scars I already have. Can't they use some other permanent pen markers that will eventually wear off? Now, I've read that some places keep doing weekly bloodwork during radiation. If that is true, I'll keep my port for that as I would rather them use that then poke my poor veins. Do you know CharB if you have to do bloodwork every week?
Bak94 - Do you have any links or studies, clinical trials you can point me to for the Her2? My Her2 was 2+ which is still considered negative (unequivacol), but I worry that I am still expressing that much and wondered myself if Herceptin wouldn't be helpful.
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Catwhisperer, the tatoos are permanent but they are barely specks. I can't even find mine.
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Heidi - loved both the pictures!
Hope60 & KSMathews - I have a question for both of you. Hope did you ever have sciatica pain before treatment, or have you recently had any kind of back injury that could cause it? Similar question KS? Don't know either of your ages, but if you're older it may just be aging. If it's new pain, if I were you, I'd go to an orthopedic and get your onc.'s opinion confirmed. Be sure to tell your orthopedic about your cancer and your fear of met's. (that way you don't have to bother fighting with your onc.) Even if it's just arthritis, orthopedic may want you on anti-inflammatories. Hope, all sciatica's present with different symptoms. I have a pretty severe case (the may have to put a spinal stimulator in) and I have severe leg pain, but no hip pain. When in doubt, sneak behind your onc's back, lol, and get the answers that you need!!!
Naan1004- I love your vacation idea!
Navymom-I want to switch to your onc., I could never get a PET out of mine ( and I have several enlarged internal nodes) and the only follow up I'm getting is a yearly mammogram.
To all who mentioned working during chemo: I am in awe of you who are doing it, you are strong, strong women! I was lucky enough not to have to work (except caring for my Mom), and I truly believe that's what helped me breeze thru chemo.
lwarstler - my first question would be, is there another specimen, or a way to get another reliable specimen to retest. If not my choice would to be to take the Herpcetin (underline "my choice", may not be right for you). Had a friend die from breast CA, who didn't take all the treatments the doctors wanted. When I got diagnosed, I decided to take every gun they wanted to throw at me. I didn't want to relapse and have "what if I" regrets.
CatWhisperer- if you have a good Rad onc., they will answer all those questions when they review what your treatment will be. I had 35 treatments. Kayak2 had an excellent suggestion about the face down treatment. The tattoo is tiny and it is smaller and lighter than my freckles. I never even notice it. I only had blood work twice in 7 weeks.
Tisthyme - I think it was you that mentioned neuropathy? (my chemo brain in action, lol). Also Cocker-Spaniel was asking about it. I only had two problems with
Taxol. It was my first treatment, and my hair fell out much
faster than they warned me ( pulling enough hair out for a Yorkie dog daily DOES NOT EQUAL " you're hair will gradually thin", lol). My neuropathy in my feet got pretty painful by the end (like walking on glass) I'm about 6 mo out from chemo, and it's now only mild numbness and doesn't interfere with anything I want to do. Make sure to take multi B vit, B6, and B12 twice a day. Also, I thought I dodged the nail loss, till 4 mo after I finished chemo, all my toenails fell off.
Sugar77- Happy Upcoming Birthday.
Fighter-34- I had an echocardiogram, before and after Chemo, not a MUGA.
Someone (chemo brain again) asked about steroids and cataracts. Usually steroid induced cataracts usually come from long term steroid use. Depends on how much steroids you got during treatment. (I only got them when absolutely necessary, and refused them otherwise.0 -
Hope60- I thought of one other thing after my post. I found after chemo, that I had stiffness and pain in my hips if I sat to long. (forgot about it, because the sciatica hasn't let me sit very long lately, lol). Several other women mentioned the same problem. But it wasn't a constant pain, once I got up and walked for a few minutes it wore off, but it was both hips. I used to refer to my first few steps after getting up from sitting as the Crone Shuffle. :-)
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I had horrible stiff pain AFTER chemo. I was fine during chemo but the sore, stiffness came about a month or so after my last treatment and lasted maybe 2 months. Watching me get up in the morning would have been hysterical if it wasn't so painfull. If I sat for a long period of time it literally took a min or so to unstiffen. It was embassassing! But it went away pretty quickly for me.
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My hips get very stiff, if I have been sitting too long (like anything over a half-hour). I only noticed it after chemo... and it's 2 years on now. Some days are worse than others - wish I knew why.
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I had to share this with all of you.... Since chemo my memory has been horrible, my long term memory is good buy my short term is well.... short term and my brain all together is just plain bad....Today I was trying to call a friend from my cell phone and I ended up calling my house phone and I couldn't understand why they kept saying HELLO!!! I almost died when I figured out I was calling myself... uuugghhhh I called my girlfriend laughing told her the story and than 4 hours later called to tell her again and I am not exaggerating I did not remember telling her earlier today.. I have really been finding myself doing the dumbest things I can't remember conversations , I forget to pay bills , take pills etc...
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Okay I was on TC so that's probably why I didn't get the MUGA scan. As far as Metformin goes I had a complete exam bloodwork, regular Dr. work-up height, weight, x-ray, and a series of questions asked related to my diet and how much of stuff I ate. I was in straight panic mode, but everything came out clear. I was told it was needed for the study.
Also I worked through chemo I wasn't sick but my mouth was a MESS. I kept it close most of the time. LOL I think my family liked that. Oh and I had watery eyes. My eyes would just run and run. My nails were shot as well.
Keep pressing on ladies!
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Gill - I was dx with cataracts at 48. Dr. Said 62 is the average for women. Chemo and rads, may be cause. Had mine removed last summer.
Annie - please pop in for pork roast dinner. I was away, cleaning my beach house for the summer rental season. When I arrived, I had no TV, phone or Internet! I had not been there since hurricane Irene went through last summer, except to meet with contractors.
Taxol is something I am very sensitive to, when it comes to neuropathy, had to stop early. Not only the tingling, but pain and numbness. I lost the feeling in three toes, the first round of chemo in 2004.
When it comes to MUGA scans, I always felt like they were seeing if we were strong enough for them to poison us
I didn't have one in the end either. 0 -
Good morning ladies.
Sugar77 - its the 27th here so its your birthday. Wishing you a great day so relax and be pampered. What a wonderful trip for you and your daughter. I hope you shop till you drop if that is what you both intend to do.
RV - hope you had a wonderful day with your family as well. Nothing like sharing your day with grandchildren, they make you feel real special.
Thank you to all the ladies that answered about the Taxol. I am a medical typist so was wondering how this would affect that. Would be awful if I couldn't type but I don't really fancy the fingernails going black and dropping off either.
I had a echocardiogram ½ hour before the first AC just to make sure my heart was up to it. Don't know if it was called a MUGA scan though. I presume I will have another at some stage. All the cardiologist told me was that my heart was okay but that I was anxious, wonder why!!.
Re the port my breast cancer nurse told me they like to keep it in for about a year in case anymore blood tests or treatment was called for. I had mine in under a GA and apparently they take it out the same way but one of the ladies at chemo also had her lung clipped so she has a pic line.
Have a great day ladies. Keep well and happy. Annie
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I am going to take some aleve for a few days, and see if the pain in the knee area gets better if not I am going to follow up with my primary and see what he suggest.
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Well it's official now, I will be getting a new port put in next week. I will be switched from abraxane to gemzar on May 7th. The liver function #s did not go down, and I am on antibiotics again because my WBCs keep dropping after chemo.
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Catwhisperer - I'm not sure what type of radiation I'll be getting. I met with my RO when I was first diagnosed and he didn't say anything about type. I'm sure I'll find out next week. It's my understanding that the tattoos are permanent, but a friend of mine who had them 10 years ago said they look like dark blue freckles. I called the RO on my own, although my MO will probably suggest it tomorrow, but I did it to keep things moving along. I want to get this all behind me. I will have 7 weeks of rads - for a total of 35 treatments. I am so over this cancer crap. I just want to go back to my old life.0
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Cat W - wear something warm for your radiation setup. It takes about an hour and a half, and the room is chilly. I wore soft sweats and thick socks. They do make a tattoo mark, it's like they stick a thumbtack in ink and prick you with it. Not bad at all, and no one would ever notice.
Make sure you are in a comfortable position when they are doing setup, and make sure they give you neck support. When it comes to having your treatments, it will take you longer to get undressed, than the treatment time. For me, compared to chemo, it was cake!0 -
Becca - hope the port placement goes smoothly and the switch to gemzar kicks those numbers back to normal.
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Cat-for my radiation last summer I got the tattoos, very very tiny dots, but I switched RO's before I ever started treatment. My new RO did tatoos that lit up under black light...no ink at all. I thought that was great. I still have the ink tattoos but I can only find one very quickly.
The hardest part for me was the drive and the fatigue. The actual treatments were easy and painless, except for the setup which takes a long time. I have a sore shoulder and it was very hard to stay in position for so long, but after that it was fine.
Also, my port was surgicially placed under IV sedation, not a local, and removed the same way. My MO wanted me to keep it in for 3 years but I refused. I left it in during radiation and had it out 2-3 months later. Some people have it out before radiation but mine wanted it left in just in case I needed IV drugs or hospitalization. I was so glad to have a port during treatment but was so glad to get it out. I have never heard of not getting dental treatment because of a port and my husband is a dentist. I was advised (and he agreed) to get all major dental work done prior to chemo, just to reduce chance of infection, but that risk is not because of the port. The port also can be a site for infection and was why i wanted it out as soon as possible, but is unrelated to dental treatment. Very interesting all the different things we are told and the different protocols we all have!
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Gillyone, I believe that the port insertion will go well. I will be using the same general surgeon that did the 1st one, she is one of the surgeons at the hospital that I work at. As I told her before , "l have your personal cellphone number, I can reach you if I have a problem." (ha ha ) I really do hope that the gemzar will do the trick on this fc. I know it sounds crazy, but I really want to go back to work.
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I've been quiet lately, waiting for my insurance company to get their act together. I finally had my muga and pet scans yesterday, and will meet with my oncologist tomorrow to hopefully finalize our plan of attack. I'm hoping and praying and begging that the results come back ok. At least, that it's confined to just the one spot. I did get my blood test results back today, and I can't tell a darn thing from them other than my red blood distribution is high, but I have no idea what that means.
I've been following this thread, though, and taking everything you are all saying to heart. I think I've been in a bit of denial since I was first diagnosed (only two weeks ago...but wow, it seems like forever), but I think it's finally hitting me and I'm finally getting past the denial and going straight to scared.0 -
Csmommy, we've all been there and r still there most times, hang in there!
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