Calling all TNs
Comments
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Hi Cocker...I had 35 rads. I tolerated it quite well. Just make sure you moisturize your skin. My RO wanted me to use Aquaphor but use what your doc recommends. I slathered it on at least 2x a day. Once the itchy red came up they also allowed me to use hydrocortisone cream to help with the itchies. You will most likely feel fatigued also. Join the gals starting rads at same time as you here on the boards so that you can compare notes with the other ladies. Glad you do not need more chemo and hopefully you will get some relief from the neuropathy soon.
Welcome to all our new members of this unwanted but unexpectedly fantastic club!
Maggie
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Gemmy,
I still have joint pain and pain in my feet, particularly when I first get up after sitting or lying down. My oncologist told me that often even six months after chemo the joint pain is worse for a while - something about chemo suppressing inflammation. I'm hoping MAYBE there will be improvement after I am a year or so out from chemo. My last chemo was in February.
Annie, I had left sided rads and other than soreness of the ribs/skin on that side (last rads in October), I don't seem to have any lingering effects. I have had chondritis (inflammation of the rib cartilage) on the other side recently but I think that may be from the chemo. I had a unilateral mastectomy and haven't done any reconstruction at this point. I still am not back to what used to be my normal "stamina" but I think I have lingering cancer treatment fatigue plus because they found a low level of estrogen receptors in my tumor at surgery, I am on tamoxifen. I've read that tamoxifen can cause fatigue. I found the treatment itself very easy and fast and I didn't really burn or have much irritation until the very end. I did have some fatigue, but not until the very end of treatment into about two weeks afterward. I worked throughout all my treatments, taking days off during TAC chemo and a few days off during Halaven - but rads didn't impact my work at all. My rads doctor is so handsome that I had trouble talking to him, lol! He is also very funny and his humor helped me quite a bit during my treatment.
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Lisa,
I have white stripes under my fingernails. My family doctor called them "Beau's lines" but I think Beau's lines actually have ridges on the nails - mine are just the lines. I don't think it is a good idea to put on fake nails as one of the possible SEs of chemo is your nail lifting off. I was told to cut mine as short as possible so they wouldn't catch on anything which could cause them to lift. I have heard that you can lose your nails (and toenails) as much as 6 months after chemo is finished. I was given clear nail polish to put on my nails while undergoing the chemo. You might want to ask your PN about using coloured nail polish to hide the white spots but I would definitely avoid the fake ones.
Doreen
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Cocker spaniel-
Good luck with your radiation. I hope your results come back with good news, I hate that you have to wait to find out!
My sister will still have 16 rounds of chemo. Her oncologist said he just wants to make sure there is no little cancer cells hiding. She had her first bone scan and chest ultrasound and both came back clear.
NavyMom- I bet Cherryfest felt a little better after hearing that you are a survivor of TN!
Cupcakies- Thank you, Im sure I will send you a message
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Cocker - I just finished rads about 10 days ago. I had 33 treatments. I got a little red, and my nipple turned brown, but that was it. I had 5 boosts in the end where they radiate the lumpectomy site to kill off any remaining cells in the area and that area is still red but not sore. I don't understand since I had clear margins, but that is what they do with lumpectomies. I was told to use Aquaphor but I found it to be so greasy. My sister only used Aloe Vera gel made by L'Bri so that is what I used 2x/day and a little hydrocortisone cream when I got some itchies. My rad nurses where amazed at how good my skin held and the Aloe Vera made my scar almost invisible. They wanted to know how to order the Aloe Vera from L'Bri. L'Bri products are all natural, not tested on animals and their main ingredient is aloe vera. You can order it from my sister's friend, Lori Stone. Her website is loristone.lbri.com and her email is loristone2002@yahoo.com. Check out all their products. I have been using their skin care products too and my skin is so soft, even my head. I used it on my scalp because it started to get red and bumpy. I love it!
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An answer I can understand. An American tourist asks an Irishman: "Why do Scuba divers always fall backwards off their boats?"
To which the Irishman replies: "If they fell forwards, they'd still be in the fickin boat."0 -
Guy girl- prayers for your sister.
Onvacation - please just keep us updated and go live and enjoy life!!!
Imsnoozy - no info but the place to find clinical trials is www.cancer.gov/clinicaltrials
Titan - just glad to know you're doing well. (Still concerned that we haven't heard any news from tnbcRuth)
Borntosurvive - being to busy to post is a good thing, means you're busy living!
NavyMom- wonderful post!!!! Glad you and hubby had such a great time. Hi to Cherryfest Gal, if you're peeking in here. Thanks for bringing back a wonderful childhood memory Navy. My grandmother had a cherry tree and used to entertain us grandchildren with pit spitting contests.
Lisadi1963- I didn't get white spots, my nails got dark at the top, like they had been dipped in brown stain. I never lost my fingernails, but they were weak and shredded for months. 4 months after chemo I lost all my toenails. I agree with Dormac. When I lost them, they lifted off completely from the nailbed, so I don't know that artificial nails would help.
Bernie - Thank you!
Gemmy1 - (and Christina) my joint pain lasted quite awhile, I would say approx 9 mo. I got so used to it that I only noticed it was gone when I popped up from a chair and didn't have to do the crone crawl.
Naan1004 - glad you got some opinions you trusted. You didn't say, are they sending you for rads???
Cocker - Granite mattress is one made by some evil elf in the mattress factory, who I think used some kind of rock instead of padding. As to rads (and of course ask your doc first) Dana-Farber is having L-side rad patients take a deep breath and hold it. (expands lungs which compresses heart and keeps it further from the rad field). They gave me Aquaphor, but it was to greasy for me. Be sure to tell them immediately if you develop any kind of new cough. Also Riley mentioned some cool gel pads that worked for her. Only thing I could find on line was a reusable gel pad nursing Mom's use. Maybe the rads group can give you tips.
Luv - Is DS still in. I checked the list last night and didn't see either of my friends.
Well ladies, first post tx mammo is on Thursday. Not what I'd call anxious, more "come on already, I want to know what the news is". But, I am also going to do something great that day! (Kathy's got a secret.........Kathy's got a secret!). *skips happily out of thread grinning*0 -
Hello Ladies. I have been reading the posts on this thread for about a week as I am trying to collect information on TNS.
My surgical path report came back ER- ( less than 1% immunoreactive), PR+ ( 3% immunoreactive) and HER-. My Oncotype came back triple negative with my ER at
.7 (>6.5 is positive on the scale they use) PR at 4.4 (>5.5 is positive on their scale) and HER at 7.9 (>11.5 is positive on their scale). Overall oncotype score is 49 which definitely indicates chemo for treatment.When my ONC went over the results he focused on the overall score, not the fact that it turned up triple negative. I know I need to talk to him about this..I see him next week. My 4th and final round of chemo is this Thursday the 12th and I have mixed emotions. Somehow I feel that my course of treatment could change after I bring this to his attention.
At my initial consult when we discussed the post surgery path report and he told me I needed to stop the HRT, I challenged it a bit because I was afraid of the mood swings and hot flashes. (Funny how a little chemo changes your view on a few hot flashes.) He told me that if there is even a small amount of tissue that is only PR receptive, the cancer is treated as hormone receptive.
Does anyone have any wisdom to offer?
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Kathy - DS busted out late in the evening (some time after the dinner break). I think his AK lost out to QQ. I suspect he was getting bored and shoved when it might not have been a good idea. He had been complaining of the slow play at the table. I sent you a PM - let me know what you think.
LM50 - My oncotype came back about the same. My ER score was 6.2 and my oncologist tried femara, didn't work for me.
CS - I used Aquaphor during my rads. My skin really broke down and I ended up with all kinds of things - antibacterial spray, special burn pads impregnated with Aquaphor, abdominal pads to protect my clothes, etc. But I had a very intensive rad treatment and yours may be nothing like that. I had done Mammosite rads previously, so I was a "special" case...just love being that special!!!
My nails held up fine during chemo, but I kept polish on them and got a mani/pedi a couple days before every other treatment. And I had Taxol, not Taxotere.
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Ladies - I havent posted here in awhile because I didn't want to upset anone. I was feeling really great except for the last couple of weeks. I had some numbness andtigling in my hands and feet...didnt think too much of it. Then my right arm went totally numb for a minute or 2...didn't think much about that either. Long story short..i started having some weakess in my arm and difficulty walking. PCP sent me for an MRI last nite...MO called today to say she thinks I have multiple brain mets and I have to see her first thing tomorrow morning. I am beyond freaked out right now!!!!
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Navymom-wow, to run into someone randomly with a similiar diagnoses! I bet she really appreciated meeting you! I had the same thing happen to me with my first diagnoses, ran into a lady that was a multiple year survivor of similiar diagnoses when I was newly diagnosed. Her words comforted me and meant so much to me, I still remember her 10 years later!
LM50-My onc says any amount of positive is positive. He said now they consider anything over 1% as positive, where it used to be 10%, then 5%. I am 3%. Tried aromasin, too many se's. Will be trying something else soon. I am willing to do ai's, but only if I can move in the morning! I can't believe how sdtiff I was with aromasin, I could not handle it!
Hi everyone! I watched an episode of The Big C and laughed hysterically. A lady (Susan Sarandon) told the cancer woman that she had caused her own cancer by being negative. The cancer lady defended herself and as she was talking to her Susan got hit by a bus!!! I couldn't stop laughing, how sick am I?! It was too funny! Of course I wouldn't laugh if it really happened in real life! But how many times have we heard "oh, well anybody could get hit by a bus tomorrow!"
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((((Hope60))))
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Hope, Sending you my best - I am so sorry you are going through this.
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Hope60
Sending good vibes your way.
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Hope - this really sucks. This is the place to come and freak out.
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Hope - So sorry you are going through this...... Hearts and prayers are with you.
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Hope so sorry - sending ((((hugs)))) and lots of them.
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Bernie how funny!
Hope60 lots of hugs and prayers your way!!
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Oh Hope, we must have been posting at the same time and i just now saw your post. Please dont worry about upsetting us. We are here for you. Thinking of you.
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Hope - (((hugs))) I know how you feel, I sometimes have the same fear. I think I am every TN's nightmare and not exactly a shining example of how metformin prevents recurrences. We're here for each other, regardless of what our individual circumstances might be.
Inmate - are you OK? Haven't heard from you in a while, and I'm hoping all is good with you.
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Hope60 - I am so sorry you have been dealing with this. I would be pretty freaked too. I also think I would be taking round the clock Ativan. Calming thoughts your way. We're in your pocket.
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Hope60 - praying for you and so so sorry you are going through this.
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Hope - we are here for you no matter what. This thread is for the good, the bad and the ugly. Never be afraid to reach out. I am so sorry this is happening.
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Hope thank you for letting us know so that we can send our good vibes to you. HUGS to you and I am really sorry you must deal with this.
Tomorrow is my 3 month follow up and I am a nervous wreck!
Maggie
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dang this laptop!
Cocker..I meant to say I love the pic of your homeland...just beautiful....and good luck with rads...I know everyone is different but rads should go well with you...maybe a little tired..maybe a little burning...but just me..but rads was easy compared to chemo....quicker, no drugs..just being zapped and you are out of there...like the others have said take good care of your skin...and if you need to let the girls go free do so...bras can really chafe the skin...
Oh Hope...I hope that your MO is WRONG!
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Navy...sounds like a wonderful time at the cherryfest...! I'm jealous...need a vacation big time..
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Hope - I am so sorry to hear your news - I am sending prayers and hugs your way!
Doreen
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Hope, praying for you and big HUGS!!!
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Mags - good luck on your follow up - positive thoughts!
Hope - (((HUGS)))
CS - glad no more chemo for you- we should be starting rads about the same time! WE we rock it!
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Hope,
Praying for you.
T0
