Calling all TNs
Comments
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You guys are all awesome. Thank you so much for all the advice. This seems like just another crappy, horrible side effect. I'm taking my mom to see her oncologist today, they should have the report from the chest xray she had yesterday. I feel so bad for her. She literally has not been able to do anything. I go over to my parent's house almost every day and clean and make my mom something to eat, she's home alone all day as my dad works 7 days a week, and she's always so thankful and it just breaks my heart. She's been really quite lately, I know she's depressed. I just want her to get done with treatment and go on with her life and be happy again and not worry and feel like crap everyday.
Jan69- she is 60, 55 the first time dx with triple neg., although they never used that name until this new dx.
Lovely-I thought so. They really are precious little dogs. I have two, one is 12, I've had her since she was a baby, and the other one is around 16 or 17, my husband found her outside of our old house one morning, no one claimed her, and it was obvious someone had not been taking care of her, so we kept her
My parent's also have one too. She is a chubby little girl. My dad's pride and joy.Thank you again everyone. I really appreciate all of the advice and kind words you have offered!!
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I'm here for my mum. She is:
Currently 60. First Dx in 2008 with DCIS Grade III node-negative TN. Had a lumpectomy, chemo and rads. Cancer free for 3 years or so we thought.
Jan 2012 recurrence - small lump in same area. Mastectomy and almost all nodes removed, all were positive. Then discovered mets to liver, lung and bone. Bone isn't as bad as we first thought and responded well to radiation, and she just started chemo last week. She will get a full body CT scan in August again.
This is beyond sucky. At first I was just terrified of losing her. Now added to that is feeling horrible about seeing in her in pain from the chemo.
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As for my mum's day to day - I'm one of three siblings and one of us is always around, altho I feel bad bc my sis seems to have the heaviest load (her kids are tweens whereas my bro and i have toddlers, and I live an hour away). My dad is retired so he's home so shes not alone in that sense, but my dad at 67 is pretty fragile himself. We all take turns taking her to appointments and are doing our best to keep all her info in order. She's got 5 grandkids who come around often enough and make her smile. But it doesn't make the pain go away.
What kinds of things should we be watching out for?
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Velociraptor, sorry to hear about your mother but you have come to a great place here for support and wisdom. What chemo regime is she getting? Sounds like if she is in so much pain you should talk to her MO. They should be able to help make her more comfortable with meds. Good luck!
CS, your cat and the bandaid fetish is too funny! Sounds like you need to stash a backup box in a safe place. We had had a dog who passed recently that had a wood fetish. She chewed door frames and doors. Still have repair work to be done. There wern't too many door frames that were spared. I'll take bandaides over wood...cheaper to replace!0 -
Luah--I do only wear my sleeve during the day but have been fitted for a nighttime compression garment that I am supposed to wear at night. It is such a pain to put on and so umcomfortable. Getting a little more used to it by the day though.
velociraptor--sorry bout your Mum.
Lovey--chin up lady! hoping for good news soon
LMBCA hope your mama can continue the fight and find strength.
Maggie
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OBXK - love the tissue idea.
Lovely- so sorry about this new scare. Waiting for an update and prayers for you
Inmate - you have an amazingly quick wit!
Cocker - I'm sure you have Nuelasta there. Taxol isn't as hard on white blood cells. I got it during the A/C phase. (I can't remember if you're going to be getting A/C). Some version of Taxol and A/C is the most common treatment used, but as you can see nothing is set in stone when it comes to treatment recommendations. The shrinking breast was no joke. According to my BS, it is more common with large breasts. I realize that saving my life is more important than my breast, but I think that is info that should be given to you before you make your surgical choices. After my Mom is gone (don't want to have the risk of surgery for something that is cosmetic while she is here) I plan on having a breast reduction, so I'll deal with it later. But, to someone else, being lopsided may really bother them. Just want doctors to be giving us the info we need for our decisions. How lovely your co-workers are!!! I bet those tidbits hubby made were greatly appreciated.
Mags - I think trying different things to see what works isn't a rebel, it's a smart woman!!!!
I have a question on LE. Do they have or use a pneumatic sleeve (may have the wrong name for it.). My friend's daughter has lymphadema in her legs, and wears pneumatic sleeves on her legs at night that help massage the fluid up. Just curious.
Babs - may be a great sign that they only itch. My doc gave me all the scary info on the chronic nerve pain you can get from them. Mine only itched, and I never had any pain during or after.
LNBCA- you're a wonderful daughter! Any chance you can get Mom on the computer and into this group? I know it was a big help with the feelings of isolation I had.
Velociraptor - Welcome and I'm so sorry about your Mom. My first thought before I even got far into your post was, how scared you must be. I'm not sure what info your asking for, when you say "what to look for"? One simple thing I can tell you is that all chemos weaken our immune system, and make us susceptible to infections, so you want to look for things like an increased temperature, or a new different cough. Please don't hesitate to ask questions, we are all here to help. Also, because I'm in the US, I don't know what services are available to help your parents. I would definitely suggest a social services consult to see what's available. One of the women for your area (I know Tazzy is) will be along shortly with better info.0 -
Hey Ladies, just wanted to give you a laugh. Remember my rant about cable making me drag my poor Mom to the office with a death certificate, before we can get the digital adapters we need?
Today I tried another track. Went online and tried to order them. No go, popped up with a message that I had to call. I called today just to find out why I had to call in. If they asked for my Dad, I was gonna say "he's not here at the moment". (It's not a lie, lol) My plan was to get my neighbor, Dick, to act as my Dad and order them if I had to (just need a male voice). I used the automated robot. Took about 2 minutes and the adapters are on the way (crosses fingers). Dearest Comcast, please give the robot a raise!!!!! Now I have some breathing space, and can get my computer and other equipment down here, before I have to drag poor Mom over there to change it.0 -
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oh Bernie...you kill me
the port is out. Doc did it right in his office and it was so much easier than I made it out to be. So relieved.
Sorry but i know nothing about the pneumatic sleeves. Mine is a farrow cut to fit sleeve with velcro all the way up from wrist to pit. It is one of the least expensive night time things on the market and is relatively new. Daytime I wear a Juzo dream sleeve and have a custom made glove with fingers.
Maggie
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Haven't been on for a while, have a funny story to share. Had my lumpectomy on 6/8, Fri, after which the nurse once I woke up encouraged me to go use the bathroom. To my amazement the hospital installed blue toilet water, I was like wow hospitals use that blue stuff too, still kind of out of it, I got discharged and went home. Once I got home I was once again amazed that our toilets too had the blue water, I told my husband all excited, I think my mom found some of those toilet cleaning blue stuff for the water, and he too was excited that anyone other than himself had cleaned the toilet for once. Then I used another bathroom that evening, which confirmed that my mom had cleaned both bathrooms. Then the next morning to my disappointment the toilet water had gone back to normal and only turned blue after I used it. I told my husband who finally told me what the nurse had warned him the first time I went pee, to not get shocked if I pee blue, it was from the dye they injected during surgery. I guess my hubby better clean the toilets after all and we really need to buy some of that blue stuff!
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What do you mean "Poor Man"? He should be so lucky!
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Naan - excuse me while I stop laughing. I thought it was odd the hospital had blue toilet water, but now I know the reason why!!!
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Hello again ladies, just thought I'd give you all a little update on my mom. Her chest xray came back fine. They think it's just all from her being anemic. She saw her oncologist's assistant today and he was very helpful. He recommended maybe getting her on some B vitamins, and he said this new shot she is getting should help with her red blood cells, (my mom and I both forgot the name of the shot..I asked her on the ride home what the name of it was and she couldn't remember either lol). Hopefully she starts to get better so that she won't need a blood transfusion. I wheeled my mom into the office today, (with my three kids in tow, boy was that fun), and one of the nurses saw my mom, and asked how she was, knowing something was up if she's sitting there in a wheelchair. So my mom told her how she's been, very tired, completely out of breath, hardly able to get up and walk from one room to another, etc. Well, the nurse said "you need to let us know if you get this bad, you might need to be on oxygen". My mom explained to her that we've all been calling, telling them she's doing horrible, (my aunt has called a few times, and my sister). So finally today she got to talk to people in that office that listened. They checked her oxygen and it was fine also, so she didn't qualify to get an oxygen tank. Well just thought I'd give you guys a little update. Hope you are all doing well today!
Kathrynn-I've tried
I got her on my sister's laptop the other week and showed her this forum. She read it for quite a while, but hasn't been back on. She's not much of an internet person 0 -
Bernie and Naan...thanks for the real belly laughs. Naan... priceless, absolutely priceless.
Inmate... hope you get some pictures to send us of the event... sounds a blast.
Velociraptor... as you are in Ontario and me in BC am sure there are different things available to us... you may wanna check out the board "The Canadian Connection... Calling All Canadian Women"... lots of women from ON there who will have tons of information for you. wishing you well.
Cocker... Just
met with my RO for the first time today... she's a sweetheart and has plenty of time for her patients. Lots more information to read and a dvd to watch. BS will confirm tomorrow when I meet him, but likely rads before surgery and they should start end of July'ish. And she did mention that the boob being nuked will likely get more 'perkier' than the un-nuked one. Wont make much difference if I have surgery afterwards anyway. Next chapter is being written.
Hope you are all having a good day/evening with little SE's.
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LNBCA, glad the X-ray and oxygen came back fine for your mom. Sounds like she had the Procrit shot. A lady on my TC thread had it too for low rbc and it helped her. I did take a B complex vitamin during chemo (when i remembered!). Does your mom have a laptop or ipad of her own? She may lurk on these forums for a while and then join in. If she can do it from anywhere in the house, she may be more likely to do so. My MIL has an ipad and loves it. My DH got me an iPad after surgery and I can't put it down.
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OMG - This made me laugh so hard. I loved it, thank you !!!
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Naan - Good story! Yeah, I remember the blue pee. And the red pee from chemo. Glad to hear you've gotten through that next step.
CS - That cat is something else...! Reminds me of the lovebird I had while I was living in St Petersburg (Russia) - once chewed through a 500,000 rouble note - like a train track through the middle. Somehow it closed enough for me to pass it on... (with inflation, it was only worth about $50).
LNBCA - Good news on your mom. I hope the shot and vitamins help boost her up.
One note on the ovaries - I guess one of my issues is that I don't have kids, and while I should admit that BC has closed that door completely, I can't completely give up the hope. I have to wait 2 years to even consider getting pregnant after chemo, which would make me 46 if I were to actually have a kid right away.
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Rachel, if you're gonna have kids, better get a move on, the longer u wait the harder it'll be on u physically.
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Morning Ladies,
Still getting used to working a different schedule. Its getting hard to stay caught up. Hope everyone is doing well.
Rachelvk - I'll be 43 2 years PFC, I've pretty much given up hope of having kids. I've wanted for so long and I feel like I've missed out on living or something without them. I'm trying to work thru my feelings and just accept we won't have children, have to admit I've got some heavy anger issues at BC for completely eliminating my last chance for trying.
Off to work! Get my first paycheck tomorrow!!! Finally, can start paying some down some of this debt we accumulated in the move.
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Belly laughs this morning! Naan - who would have thought we'd pee patriotic (well, at least here in the US)!!!
BernieEllen - how do you keep coming up with this stuff???
Heather - congrats on that first paycheck!
Found this picture today - I took it last July in a neighborhood on the Rhode Island coast. Enjoy!
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Those are beautiful LVRVing.
I got my port out yesterday and the procedure was so easy. A little sore today but do not have to go in to work so no worries. It is something how worked up I was about it coming out and it was a piece of cake.
My son and his wife are getting a divorce so my sadness is consumed with them. It is kind of good to get the focus off myself in my thoughts though. I have been so down about the LE that it has helped me not to think of that.
Today is my 26th anniversary with my Hubby. This last year has proven how right we were for each other. He has been my rock through this whole ordeal and still surprises me with his strength. He has really stepped up and helped me through all this crap and now he is helping me with my decision for recon options. Love him so much...sorry will stop gushing now.
Maggie
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She just got a Kindle, but we still have to get her hooked up to wireless internet. I think once we get that hooked up and she figures out how to use her Kindle, she will come here more often
I forgot to mention that she had an ultrasound done about a week and a half ago and the results were great from that. It showed that her 1.4 cm mass has shrunk to .7 mm. She's half way through treatment and it's shrank in half so far
Hoping the Taxol takes care of what's left. 0 -
Bernie..... LOL ! My morning laugh - thank you.
Happy 26th anniversary mags - hope you are going to celebrate by doing something nice.
Luv.. those hydrangeas are beautiful. For some reason my one in the garden is not doing very well this year
LNBCA - that's great news about your Mum... here's to further shrinking.
Way to go on the first paycheck mccrimmon. That has to be a good feeling.
Hoping the rest of you lovely ladies are enjoying your days with very little SE's.
Off to see the BS today - chat later.
Peace and hugs xxxxxxx
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Heather - Are you enjoying your new job? I am sorry that you did not experience motherhood but still there may be a chance as they may have some new techniques. I have had one child, but honestly speaking, I feel the world has become so very challenging these days that maybe one is lucky not to have the burden of raising children and seeing them go through a rough time just trying to live. I hope I am not being negative but sometimes I feel if my children did not have children (my grandchildren), I wouldn't be that upset. I see an even more difficult future for all humans, especially disease-wise. If I was in your place, I wouldn't have any regrets whatsoever.
LuvRVing - You have an eye for beauty! I love purple, the flowers are beautiful.
Hello Tazzy - good luck with your visit to your BS today.
Bernie - Ha! ha! ha! My first instinct was to look at my thumb!!!! 3X length of his thumb. Really? I wonder if that is the measurement "at ease" or at "full excitement"???? I hope that is at ease. My thumb is pretty short (ha! ha! ha!).
Mags - You are so furtunate to have a great life partner. How wonderful to have the love of your life next to you at bad times. I am so sorry to hear of your son and wife getting a divorce. Do they have kids? My son just got married to the best girl ever, and just thinking on those grounds, gives me the shivers. I couldn't bear it.
LNBCA - Good to hear good news about your mom. You are an amazing daughter. I think your mom is lucky to have all her children take such good care of her.
One of you incredible ladies had been so kind to look up a medical terminology for me in an earlier post, the word was "Oncotype". I just wanted to thank you, it felt so nice that someone had cared enough to look up a word for me in a dictionary. I am sorry I was unable to reply to you then. I think the post appeared several pages ago, therefore, I haven't been able to find it. Actually, "Oncotype" is what was on the report and I had typed it correctly, but since you said there was no such word in the medical dictionary, I feel that it was a typo by the transcriptionist. In any case, I am having my thyroid biopsy tomorrow so hope to have better answers.
In the meantime, my BS office never called me back regarding my new pain issues, which is not unusual. I have always felt that she doesn't care. I honestly feel like changing all my doctors, even my Oncology office. Just feel like going to another medical group or something.
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Tazzy - glad you likes your new doc.
StayShiny - thanks for mentioning "procrit". I've been trying to pick that drug name out of my chemo addled brain for a couple days.
Rachelvk - (and McCrimmon too). Now I understand. For some reason, I thought you were 50. I'm so sorry for another thing that this awful disease has done to you. (((HUG))))
Bernie - I've told men that fact and it's hilarious watching them repeatedly sneaking looks at their thumb and then switching to sneaking looks at the other guys thumbs.
Mags - congrats on the port removal. Sorry for the sadness of your son's divorce. (I'd rather you win the lottery to distract you from the LE!). HAPPY ANNIVERSARY!!!!
LNBCA - that's wonderful. Even if she never posts and just reads the thread, it might help.0 -
It's horrible to feel as though your surgeon doesn't care. I completely understand wanting to replace her.
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Tazzy - forgot to tell you I laughed when I read "And she did mention that the boob being nuked will likely get more 'perkier' than the un-nuked one.". My doc used that "perkier" line also, but I think they just do that to make it sound like a good thing. I assure you that little sister still sings a lovely duet of "Swing Low Sweet Chariot" with her big sister, she's just smaller!
Lovely - the closest word I can find that makes sense is "Oncocyte: an acidophilic " (just means stains with an acid dye) "granular cell especially of the parotid gland". Since your parotids are in the same location as your thyroid, I'm guessing they got a parotid cell in your sample. Please keep calling back till they return your call. I often have to call several times, to hound the staff. ( and if I keep having a problem, I wrote down the BS's cell phone when she called with my surgery results, and I'll use it if I ever have an emergancy they don't respond to!!!)0 -
Kathyrnn.... I laughed too when she said it cos if I end up having rads before surgery... it really wont matter will it. That made me laugh... Swing Low... ha ha ! yeah I definitely have that problem. I bet they do say 'perkier' to make us feel better - think last time I can refer to my boobs as being perky was about 30 years ago.
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Kathyrnn - so you are the angel who looked up the word for me. Thanks so much. Wow, that makes sense now. I am sure the transcriptionst made an error spelling it. Well, I am so scared, see what happens this time.
Ladies, I want to ask everyone - does anyone have pain on their surgery side, so many months afterwards? Is this normal? What possibilities are there for pain. I have always had a hard area around the surgical site, it is somewhat getting softer. But the pain this time is coming from the surgery site all the way to under my arms, a few very sharp painful areas. They say cancer does not hurt, but the first time around, both of them were hurting. This time too, I feel tingling etc. in the other one, and lots of pain on the cancer side. Oh, my goodness......... this is the third or fourth day with the pain. Does anyone have any idea what could possibly cause pain? What is the logic behind hurtful breasts? Is it high estrogen? Too much acidity? What the f.......k is it?
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