Calling all TNs

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2014

    Spica that was a brilliant account of an MRI and I am sure will bring some comfort to the ladies going through one. I had several scans when first diagnosed but I can't remember whether one was an MRI and I haven't looked at my 1000 and more!!  pages of notes since my surgery.  Just don't want to go there.

    Mags, Syl58 and lookingfw still in your pocket and keeping as still as possible (If you knew me you would know that is almost an impossibility for me).   lol   

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2014

    Which one are you <img class=" src="https://scontent-b-sjc.xx.fbcdn.net/hphotos-xfp1/t1.0-9/s526x395/10256498_686171458087607_5683621466811440779_n.jpg" />

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  • mags20487
    mags20487 Member Posts: 1,591
    edited July 2014


    thanks Annie....leaving the house in just a few minutes for the biopsy.  then the waiting for the results begins!

    Mags

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  • Allydp
    Allydp Member Posts: 520
    edited July 2014

    Mags, Shari and Marsha - I am thinking of you as you go through testing and waiting on results. You will all be in my prayers. Sending gentle hugs and prayers. 

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  • LRM216
    LRM216 Member Posts: 2,115
    edited July 2014

    Annie:  Oh, so very true!  Love it.  Sending hugs to you and hope you had a great weekend.

    Linda

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  • lilyrose53
    lilyrose53 Member Posts: 216
    edited July 2014

    Hi all! 

    I'm so far behind on this thread-I'll never catch up!  Hope you are all doing well today.  I have a question for you all.  Have many of you kept your port in after chemo?  My onc mentioned that I might want to keep it for awhile once I'm finished chemo.  He said TN is sneaky and I may end up needing more chemo.   They have you come in for port flushes every month.  I forgot to ask him how long he thinks I should keep it. 

    So did any of you keep your port or still have it?

    Wishing you all well.  Hugs,  lilyrose

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2014

    lilyrose  I wanted to keep my port (just in case) but it was not to be. Went for a monthly flush and the darn thing blew a fuse.  Started to get very painful as they flushed it and then the area all around it swelled up and the fluid leaked into the flesh.  If that hadn't of happened I would still have it in now.   I loved my port it was so much better than them digging each time to find a vein that wasn't there.  Thank God I had finished treatment.  

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  • CanuckMom
    CanuckMom Member Posts: 173
    edited July 2014

    strange, my onc. never offered the port to me..I guess they are waiting to see how my veins hold up.

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  • JAN69
    JAN69 Member Posts: 947
    edited July 2014

    Lilyrose,  Hi there, I don't post very often, just lurk often.  My MO suggested I have my port removed when I finished chemo and radiation.  But I wanted it left in until my next scan just to make sure I was NED.  Taking it out was a breeze.  I asked for local instead of their usual knock out.  Not a problem.  My port wasn't all that comfortable, so I was happy to have it removed.  If I ever need to get one again, I would do it the same way.  Wishing you well in your recovery.

    Cocker, I see you are up to your feisty old self.  Love that cartoon.

    And to you gals who are on the hellish roller coaster ride waiting for results:  I hope you all get the all clear results soon.  

    I'm spending the day with my nearly 14 year old GD.  With my guidance, she made a loaf of sandwich bread and a loaf of zucchini bread using zucchini from her very own garden.  She is so special that I can leave this earth knowing she will conquer every thing that comes her way.  Wants to be a zoo keeper or a marine biologist.  And if I may brag, she writes better than any high school student I ever had (25 years of teaching hs).

    I think lymphedema is going to be worse than my bc.  Maddening, I say!

    My best to all.  Jan

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2014

    Jan yep my port removal was a breeze too.  Just under a local as I didn't want to be put out anyway.  Must have taken 10 minutes.  Took longer to get me ready.  When I asked the surgeon when he would take it out he said its gone.  Was a bit uncomfortable when it was put in across my right shoulder blade when I laid down at night but I have hidden veins (that's providing there are some there!!) so I was pleased to have it.   

    Yep Jan I'm still getting up to mischief but I do love to,  and make people laugh if I can.  Helps me through all the bad bits of life. 

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  • mags20487
    mags20487 Member Posts: 1,591
    edited July 2014


    me and my port had a love hate relationship...it always hurt.  Due to that I had it removed almost immediately after finishing chemo.  I just read an article about the titanium they use for some of these implanted devices and biopsy markers.  some of them contain nickel...which I am allergic to so perhaps that is why we did not get along so well.  The initial biopsy marker hurt inside until the breast was removed too....hmmm???

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  • Spica16
    Spica16 Member Posts: 130
    edited July 2014

    "With really loud bad electronic music playing!"

    Bluebird, ain't that the truth!

    During c-spine MRIs I ask for smooth jazz. It's pretty awesome when the music syncs with the machine 'noise' ! 

    ~  Shar   Headphones  

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  • Spica16
    Spica16 Member Posts: 130
    edited July 2014

    Thanks Annie, 

    I can only remember one year in my 11+ years of MS when I didn't have a MRI, and some years I've had multiple ones. Practice makes perfect!

    By the way, I've found the answer to getting past thinking about BC all the time...having another crappy disease to deal with.

    I don't recommend it.

    ~ Shar (aka Grandma Wobbles)

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  • BanR
    BanR Member Posts: 289
    edited July 2014

    slv( shari): pls ask if open MRI is an option for you. Like Nettie said, even for me closed MRI is a big no. I got my MRI done in two installments even after taking an anti- anxiety tablet. Finally i decided to call my husband in and make him sing and I also hummed along...30 minutes i had to stay still, that means 20 songs..thats how i calculated as i went in.

    ally: i so much understand your situation.  i was planning to have  my second baby when this diagnosis came along. and I have an unknown mutation in my BRCA2. Doc says it looks like a harmless one but still my ovaries and uterus etc are also under screening along with breasts. Do everything to take yourself far away from this disease, even if it means, removal of uterus or ovaries. Your life is more important than a life which has not yet arrived. 

    stupidboob, tifj and everybody who have completed milestones or NED..congratulations! 

    tifJ: thanks for sharing that lil piece of info about bone pain vs muscle pain.

    simple: thanks for the link

    cocker, stupidboob and others who shared that info abt the virus... thanks! 

    I hope, I hope that by the time my daughter grows up, BC will be a 100 % curable disease ..

    Lily: my port is still in. My onco said "If you can make it for the next 4 years, I will get it removed - and I hope you will do really well". So its in. You need to get it flushed once every 3 months.

    A friend of mine....a young girl age 27 with 2 beautiful children, one 6 and another just 9 month old baby, is battling diffused stomach cancer and got jaundice in between chemos. I am really worried for her. Pls keep her in your prayers too.

    love to all and hugs to everybody who are waiting for their scan results.

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  • adagio
    adagio Member Posts: 982
    edited July 2014

    canuckMom - I didn't have a port either - wasn't offered one by my MO, but fortunately my body had one perfect little vein which took all 8 rounds of my chemo with nary a bruise - I feel so grateful for this alone. If your veins are fine - all should be well. Good luck to you during your chemo - it can be quite the roller coaster, but this is a great place for tips and practical advice from many who have travelled this path before us. 

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  • slv58
    slv58 Member Posts: 1,216
    edited July 2014

    BanR, I hate this disease, lots of positive thoughts and prayers for your young friend. This is so unfair.

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  • Radical2Squared
    Radical2Squared Member Posts: 460
    edited July 2014

    Adagio,

    All 8 rounds in one vein? I've had 2 rounds ACT and those two veins still hurt like he'll to the touch. The more recent one from a week ago is still bruised. I'm glad my teeth are decent because between my hair and my arms, I'm looking like a heroin addict!

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  • Scwilly
    Scwilly Member Posts: 489
    edited July 2014

    I'm new to this thread so Hi everyone.

    I had a PICC line instead of a port. See http://en.m.wikipedia.org/wiki/Peripherally_inserted_central_catheter

    It was inserted by a senior nurse at my infusion centre. It needed flushing and the dressing changed weekly, covering during a shower and no swimming is allowed. These last two points were a pain but apart from that I got on great and had 4 * AC and 12 Taxols. I wasn't ever offered a port (I never thought to ask for one - at that time I was in a bit of a blur) although I saw many when I was having chemo (I'm with Kaiser so it wasn't an insurance decision) I wondered whether it was because my BC was on the left or because I was dx with Inflammatory BC. It was removed in a couple of seconds and after my last chemo and I have just a small scar on my arm. 

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  • TifJ
    TifJ Member Posts: 1,568
    edited July 2014


    I'm another one that had a love/hate relationship with my port. It was great for chemo infusions and antibiotic infusions when I developed neutropenia. It was always uncomfortable though and I never got used to it- I couldn't wait to get it out! That decision was made for me 5 days after my last chemo, the catheter to the port became infected and it had to be removed right away. I had 12 days of IV antibiotics and I really missed it then! I have no decent veins left in my arm! They left the removal incision open (because of infection) and I had to "pack" it for 7 weeks. I rarely moved my arm during that time because of the pain and this eventually led to adhesive capsulitis (frozen shoulder) and 10 months of therapy! So, more of a hate relationship I guess!!

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  • Nettie1964
    Nettie1964 Member Posts: 759
    edited July 2014

    image

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  • slv58
    slv58 Member Posts: 1,216
    edited July 2014

    to all the wonderful, generous and supportive women on this board, thank you for all you have given me. I must say everyone was quiet and still during the pocket party! Well I'm home now and still a bit loopy from the Ativan, but just wanted to report it went well and I felt very little nervousness (thanks to RX!) and Shar's wonderful detailed description was bang on! Nothing was left out which made me so much more relaxed. And yes the thing is very noisey-really bad electronic music, with no beat!

    Now the hard part of waiting and praying. Thank you everyone!

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  • slv58
    slv58 Member Posts: 1,216
    edited July 2014

    Marsha, thinking lots of positive thoughts for you tomorrow. Wear big pockets, cause there are a lot of us jumping in and we will be very quiet when need be! Hugs!

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  • Meadow
    Meadow Member Posts: 2,007
    edited July 2014

    Im so glad it went well SLV! Im so glad. Did the wash cloth help or were you comfortable without one?

    Keep us posted for results   Meadow

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  • LPBoston
    LPBoston Member Posts: 89
    edited July 2014

    Mags wishing all is well - I have a breast MRI tomorrow - not that I have real breast left which is weird they are doing this but they are looking at a lump on my right side - they think it is fat necrosis from the surgery but want to be on the safe side.  Ultrasounds weren't clear enough.  I am freaking out because I've had a breast mri last year and could barely get through it.  I am not a good meditator so trying to relax is not in the cards for me.  Anyone have any ideas that helped them get through this without taking anything? 

    FierceBluebird god love ya!  Your husband sounds like mine - it doesn't matter to him that I look like Frankenstein's daughter with all the scars and lack of feeling in places as long as he can do what he does he's happy.  We are going on 32 years as well.  Oh such fun!

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  • Meadow
    Meadow Member Posts: 2,007
    edited July 2014

    Thinking of you LP

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  • BanR
    BanR Member Posts: 289
    edited July 2014

    slv: so glad that it all went well. The high decibel noise is irritating though..for that GE has come up with a special noiseless MRI machine. For me it is the closed tunnel like thing which I hate.

    LP: As i mentioned in my previous post, I hummed 20 songs and by the time I finished the last one...the scan was done. I am terribly claustrophic ..so much that, I am scared getting in an elevator alone!! :):) I will be thinking of you...all the best.

    Love to everybody...you all are my biggest support system

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  • Radical2Squared
    Radical2Squared Member Posts: 460
    edited July 2014

    Slv,

    So glad it went well! The way you were talking, I was genuinely concerned you might have a breakdown! Sounds like you stayed cool as a cucumber though!

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  • slv58
    slv58 Member Posts: 1,216
    edited July 2014

    thank you everyone! I think the Ativan helped and everyone's suggestions and tips! The wash cloth was a saver for me, I did as was suggested-looked up at the ceiling, then put on washcloth and closed my eyes. In I went and I was ok. I knew it had to be done and tried belly breathing. Then I started counting "bad electronic piano notes" accompanied by garbage can clanging!  Now I just have to keep my positive thoughts for a good diagnoses.

    LP, is there a reason you don't want to take lorazepam ? I decided that after the mental torment of getting the picc line in, I would always ask if I felt the procedure was beyond my ability to get through. I find it really relaxes me and would highly recommend it, just make sure you don't drive. The washcloth was helpful! Best of luck, I will be thinking of you -hugs

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  • TifJ
    TifJ Member Posts: 1,568
    edited July 2014

    Mags, Shari and Marsha (hope I'm not forgetting anyone!): Thinking of you lovely ladies this morning and sending good thoughts for negative results on your scans!

     


     

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  • slv58
    slv58 Member Posts: 1,216
    edited July 2014

    TifJ, thank you, I'm amazed at what a great group of AWESOME women we are! I'm grateful!

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