Calling all TNs

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  • DorMac
    DorMac Member Posts: 155
    edited November 2012

    Babs37 - The requisition I have says "bilateral mammogram" and, according to borntosurvive, in some cases they do seem to try a mammogram. I would certainly prefer an ultrasound and MRI as I don't trust mammos at all to find TN. A lot of women on this site have had mammos within 6 months to a year before they find the tumours themselves.

    My younger sister had a mammo 7 months before she found her own tumour and, unfortunately, it was too late and she passed away from TNBC. Because of our family history (tested negative for BRCA gene mutation), I volunteered for a clinical trial for examastane. Being on a clinical trial meant that I had very intense follow-ups including MRIs and that's how mine was found at a very early stage. Now, having actually had TNBC, a mastectomy and chemo - I no longer qualify for MRIs. I practically begged my oncologist for MRIs but, apparently the "new and improved" Ontario Breast Screening Program has determined that I am NOT at high enough risk! Screw 'em! I am going to PAY for MRIs myself 'cause I am sure that if it recurs, by the time they find it, it will be my death sentence.

    Sorry for the rant. I have, for the most part, stayed positive throughout this whole experience - mainly because it was found so early and I'm pretty sure they got it all with the surgery and chemo. But I really feel abandoned by this Ontario Breast Screening Program. Luckily, I can afford MRIs but what about those who can't?

    Doreen

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  • Babs37
    Babs37 Member Posts: 455
    edited November 2012

    DorMac- My oncologist told me at my last visit in september that an US is as effective as an mri for BC. Maybe you could ask for an US. I have to say that I am VERY happy they don't make me do a mammogram on my mx side. Just thinking about it makes my knees weak...Tongue Out

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  • christina1961
    christina1961 Member Posts: 736
    edited November 2012

    Bernie, Poppy Day is a wonderful tradition.  I always think of my father and his older two brothers on this day. My oldest uncle was in a horrible tank battle in France in WWII and would never talk about it. They lost many that day.  My parents were married during a weekend leave; Dad and his other brother served in the Navy in WWII.

    Hope, very good to hear from you.  I have a friend on Long Island. We know she is ok, but not sure if she has power back or not.

    I just get a mammogram on the remaining side - no ultrasound on the MX side, wonder why? I see the BS tomorrow, then have my oncologist appointment next week.  Starting to get a little antsy.

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  • Titan
    Titan Member Posts: 2,956
    edited November 2012

    OBX...feel your pain on the neulasta shot.....I hated that freaking thing..hated it hated it hated it...did I say I hated it...??? too afraid to refuse it though dang it...had a reaction to a flu shot a couple of weeks ago and I felt that same pain...brought back those freaking memories of that shot..my skin hurt, my bones hurt..nasty stuff

    I still am very uneasy having just mammos and not mris on my breasts...even though they have been fine..I don't trust them...but I do count on the manual exam...my boobs have been felt up so much I'm sure the docs know them better than my husband...!

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  • DorMac
    DorMac Member Posts: 155
    edited November 2012

    Babs - I will ask my oncologist about an US but I doubt the OBSP will approve it either. I might feel better about a mammogram if we weren't talking TN. I guess they figure if I got it once, what are the chances that I will get it again? I'm sorry, 1% is too much for me.

    Doreen

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited November 2012

    Today's giggle. I can remember when I was young enough to do this!!

    Haha 

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited November 2012

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited November 2012

    Nothing like waking up to morning giggles.  Thanks for the wakeup smiles!

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  • Luah
    Luah Member Posts: 1,541
    edited November 2012

    Dormac: For the past 2 years, I've been able to get annnual MRIs based on my onc's requisition. Last year, she warned me I might not meet new criteria, but I got the appointment. This year, now three years out, I'm not so sure.  

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  • Tazzy
    Tazzy Member Posts: 2,546
    edited November 2012

    Thanks for the giggles ladies - as Michelle said great way to wake up to morning giggles.

    Michelle - happy to see you posting - think of you often. 

    hugs to all xxxx

    I am off for rad #27/28 today - nearly done... and that would be well done - pretty sunburned but its OK.

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  • borntosurvive
    borntosurvive Member Posts: 213
    edited November 2012

    I forgot to mention that my mastectomy bathing suit came in handy for our room key/card.....I just slipped it right in the pocket

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  • gillyone
    gillyone Member Posts: 1,727
    edited November 2012

    For born - Smile

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  • QueenKong
    QueenKong Member Posts: 154
    edited November 2012

    I was discharged from the hospital today. I'm having such a hard time. I'm feeling somewhat better but the leg pain is killing me. I had Abraxane alone (same as taxol but no steroids) last Wedesday. It was my first of 4 of this after 4 of AC. I don't know if the leg pain is from the neulasta shot or the chemo. I have to go get my daughter for school more info later.

    Pain is like an 8 or 9 on that scale they keep asking me where I used to say 2 or 3.

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  • OBXK
    OBXK Member Posts: 791
    edited November 2012

    Tazzy - woo hoo! One more day. I remember how wonderful it felt not to have my days, interrupted by that appointment.



    DorMac - I bought my PET scan. If you need peace of mind, it's worth the cost.



    QueenKong - I hope you get some relief soon.



    Bernie &Annie - thanks for the smiles.



    Feeling better today. A NP friend, suggested that I ask for a 72 hour patch, for the neulasta shot, next go round.



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  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited November 2012

    Obxk...I hated neulata....the pain kept me up at night.....they didn't give me vicodin...I should have asked....hope it will be gone in a few days......take good care.

    Hope...how awful...2 1/2 days was enough for me....couldn't wait to get water back and shower. So sorry.....

    Ladies I had an anxiety attack this AM. Not sure why. Today is the anniversary of my last bit of treatment, radiation, don't know if that played any role and today my dear and close friend is starting chemo for pancreatic cancer. Going to paint as I have to get work to 5 different galleries in the next 3 days....and I have NO TIME!!!!!

    Hoping everyone finds a small glimmer of joy in their day.

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  • Kymn
    Kymn Member Posts: 999
    edited November 2012

    Susan I sometimes get anxiety attacks too, I think after everything we have been through its inevatable that it will come out here and there. Good luck with your painting.

    Have a great wednesday girls

    hugs Kymn

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  • njprn
    njprn Member Posts: 39
    edited November 2012

    Hi all, although I don't often post I check in regularly. 

    Navy; Hang in there! I can relate. I was a Navy nurse, met and married my DH and we were career Navy and our son is now a Marine (I now appreciate what I put my parent's through!). He is stateside but still 3000 mi away. When I was diagnosed he came home for a mom fix and we skype frequently.  Technology makes the deployments more tolerable. This dx brings the reality of life"s fragility....Please thank him and your family for your service.

    Tazzy; congrads on your last rad!

    I finish rad on Fri. A little bittersweet after the better part of a year being spent actively fighting this creature. A little nervous about the transition to waiting and hoping for the best. My onc does not do blood markers or any scans unless symptomatic. Does that sound reasonable to the rest of you???

    Wishing everyone the strength to have their best day possible..... Nance

    PS Hope is there anything you or friends need that we can help with??

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  • txjunebug
    txjunebug Member Posts: 212
    edited November 2012

    QueenKong - praying and sending hugs. 

    I started calling Nuelasta - the shot from hell.  First one is Saturday.  Not looking forward to it. 

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited November 2012

    txjunebug - are you taking claritin while taking neulasta?  I don't remember if it's been mentioned to you or if it just didn't work for you...claritin for the day of the neulasta shot and for about 4 days afterwards helps many of us with the pain from the neulasta shot.

    Hugs to you,

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  • OBXK
    OBXK Member Posts: 791
    edited November 2012

    Susan - I had a little melt down today too. I think mine, was from stopping the vicodin I had been on for 4 days to help with the neulasta pain. Took an Ativan and feel better. Hope you are feeling better soon, so that you can get your work completed. We'd hate to see you go through a "blue hen" period ;)



    I bought myself a new duvet and cover, along with sheets. It is all white and makes me feel like I am in a grand hotel.



    Love to all...

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited November 2012

    I bought the white bedding last year and I love it!

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  • gillyone
    gillyone Member Posts: 1,727
    edited November 2012

    Junebug - although some people have a terrible time with the Neulasta shot, many of us don't. I had one after each chemo and had no side effects whatsoever. No bone aches, didn't take Claratin so, everyone is different!

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  • ksmatthews
    ksmatthews Member Posts: 812
    edited November 2012

    I took claratin and aleve and never had any problems....also drink lots of water!!!

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  • Gemmy1
    Gemmy1 Member Posts: 46
    edited November 2012

    Hi ladies,

    I have not posted in quite a while, hope you Are all doing well and progressing through chemo and other treatments SE free!

    I am hoping to get some expert knowledge. Has anyone had the Essure and Novasure procedures? I am interested to know first hand, what the downtime is and how much pain if any you had? Would you recommend it? Any other useful info you think I should know. If you would rather PM me than answer on the thread, that's fine too.

    Thanks for your help,

    Theresa

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited November 2012

    John invited his mother over for dinner. During the course of the meal, his mother couldn't help but noticing how beautiful John's room-mate was. She had long been suspicious of a relationship between John and his room-mate, and this had only made her more curious.

    Over the course of the evening, while watching the two interact, she started to wonder if there was more between John and his room-mate than met the eye. Reading his mom's thoughts, John volunteered, "I know what you must be thinking, but I assure you Julie and I are just room-mates."

    About a week later, Julie came to John saying, "Ever since your mother came to dinner, I've been unable to find the silver gravy ladle. You don't suppose she took it, do you?"

    John said, "Well, I doubt it, but I'll write her a letter just to be sure."

    So he sat down and wrote: "Dear Mother, I'm not saying that you 'did' take the gravy ladle from my house, I'm not saying that you 'did not' take the gravy ladle but the fact remains that one has been missing ever since you were here for dinner."

    Several days later, John received a letter from his mother which read:

    "Dear Son, I'm not saying that you 'do' sleep with Julie, and I'm not saying that you 'do not' sleep with Julie. But the fact remains that if she was sleeping in her own bed, she would have found the gravy ladle by now. Love, Mom."

     

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited November 2012

    Hi ladies

    Karen  your new bed sounds lovely and comfortable and you can't beat pure white crisp sheets. Enjoy.  Bet you can't get out of it. I'm missing my jammies and dressing gown in the morning. Have to get all tarted up now in uniform, make up on, earrings and rings  etc.  The only good thing is I don't have to comb my hair, not got enough of it but everyone of the girls at work say the short hair and color suits me so might keep it this short.        

    I have been back to work for two weeks now and so far not too bad.  Just a little tired and sore but I suppose I have to expect that.  I've got the "why is my neck sore", "what is that pain around my port is it a blood clot" and "am I unsteady on my feet this morning" .  I'm sure I'm a walking psychopath now. Frigging cancer, never thought of anything like this before I was diagnosed and never suffered with anything.   

    I can't help with the Nuelasta shots as I never got them here and as far as I know none of the other girls got them either unless we call it a different name.    

    Thinking of all of you undergoing, about to undergo or recuperating from surgery or pain.   Big hugs to all. Annie  

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  • Luah
    Luah Member Posts: 1,541
    edited November 2012

    Re neulasta, I was the same as gilly - didn't notice any side effects at all. I had some minor aching but I think it was the chemo. 

    Gemmy1 - Sorry can't help with that - haven't heard of those procedures... maybe not done in Canada. Hopefully someone will be along shortly to answer. 

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  • Tazzy
    Tazzy Member Posts: 2,546
    edited November 2012

    Want to share with you all.... I am finished rads - woo hoo!   What a lovely feeling not to have to be nuked daily and drive to the facility.  As I am on a clinical trial I will be returning every 3 months, but that's OK, I am fine with that.

    I suffered horribly with Neuelsta shots... but everyone is different.  I didn't know about claritin at the time, and just took lots of T3's.

    Love and healing hugs to all xxx

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  • melissa119
    melissa119 Member Posts: 172
    edited November 2012

    Hi ladies!

    Hope everyone is doing well. I have some questions for all of you ladies. I finished treatment last Wednesday (yay!) and I am now dealing with my nails being swollen and lifting and oozing a puss like fluid (sorry to be graphic). It is 4 nails. My mo said it is a side effect of the taxol :-(. She gave me an antibiotic, told me to use tea tree oil and soak in Epsom salt. I am doing all this but want to know how long this will last? Being out of tx a week I am hoping that once my body starts flushing this stuff out my nails will start to get better? Anyone else experience this with taxol? I have trouble doing much of anything. Even buttoning my sons shirt is nearly impossible :-(. And of course 3 of the 4 effected nails are in my dominant hand! Ugh. Just frustrated that I made it thru chemo so well and now that it is done I am still dealing with this crap. Anyway. The other thing was mt mo said now we just go to 3 month followups? Does that sound like what you ladies experienced i want to be happy treatments done but its scary and i cant seem to celebrate yet.

    Any advice would be appreciated.

    Thanks!

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  • Kazzie61
    Kazzie61 Member Posts: 452
    edited November 2012

    Hi ladies.......I've been reading this thread for awhile now but never posted!

    I was diagnosed with TN bone mets in L5 & 2nd rib back in May.

    I had radiation on both spots.

    My latest scans have shown more spots on the spine & rib as well as the pelvis, so it's time to start the chemo again....yuk, yuk,yuk!

    I'm seeing the onc next Thursday & will prob start treatment the following week.....it seems harder this time around knowing how shitty it is!

    Anyway, just wanted to join in & hopefully some advice on treatments might be forthcoming as well as much needed support (((hugs)))......



    Karen x

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