Calling all TNs

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  • Hope60
    Hope60 Member Posts: 223
    edited January 2012

    Whitedog and Joyce - Sorry you have to be here....sorry we all do...but welcome.  You will find a lot of information and support on this board.

    Joyce,  I totally understand your anxiety over your upcoming scan....I think we gave all experienced that....wonder if it ever ends!  

    As for cognitive issues.....I had chemo-radiation brain for quite a while after treatment.  Had memory problems, trouble concentrating and difficulty finding words.  Happy to report that most of that is gone, but it took a good 6 months at least.  

    Best to all. 

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  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited January 2012

    Husker and Bak - I do have the port in place and it is still tender.   I am going to be having DD - 8 AC every 2 wks and then 8 Taxol every two weeks.   I am sure hoping that the port is worth everything I've gone through which I did because I have very few and small veins that the nurses said would probably only last maybe a couple of treatments.  I was trying to be proactive by getting the port.    I actually still have a huge hematoma still from my lumpectomy on 12/7 so my whole chest seems like a battle zone.

    Bak - I am right there with you in the whining....   Hope you are doing better.

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

    Bak...my dh and I went to a casino this weekend also...the only thing is..I lost and so did he..I told him that YOUR dh won...told him he better amp up his game

    Well to the new ladies here...my name is Joyce too!

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  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited January 2012

    Cat, I think in spite of all the pain and suffering you will appreciate the port. One thing that helped me was getting a numbing cream (requires Rx). Ask your onc nurse before you go for first chemo. You put it on about an hour before your treatment and then cover it...some use saran wrap but I found it easier to use a non-stick square Band-Aid. Let me know if you want more info and I can get the specific name of cream and bandage...both of which escape me at the moment! Infusions aren't painful (normally) but you will be tender. I had my infusion 3 days after my port was placed. It was a bit sore but not terribly so.

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited January 2012

    Bak - don't worry about whining here, whine all you want, my friend.  Don't you worry about such small things, pour your heart out here, this is the place. I am with you all the way, my dear!

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  • CharB22
    CharB22 Member Posts: 310
    edited January 2012
    Linds2013 - welcome to you and your mom (although it sucks that you need to be here). Her diagnosis/treatment sound similar to mine. I had a lumpectomy first - didn't know I was TN until after pathology report came back. I had the genetic test done for the BRCA gene mutations and will get my results on Thurs. My RO said that if I have the double mastectomy, then there won't be anything to radiate because of no node involvement. I'm not sure which I want more -- no boobs or radiated ones!
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  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited January 2012
    Husker - I was wrong, I am having 4 AC and 4 Taxol every 2 weeks for 8 cycles (16 weeks total).  I did get a prescription numbing ointment to put on my port site before infusion.   It says to put on only 30 minutes before stick, but the literature says 1-2 hours before.   Since locals (which is lidicaine) don't work for me, I am thinking I should start putting it on 2 hours before.   How much do you use and how much of an area do you put in on? Just where you get the stick, or do you also numb the catheter and vein?  I know some medicines sting the veins like heck, so just wondering if anyone could share their experience with the numbing.   Do they also do the blood draws in your port?  Any problems with that?
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  • Babs37
    Babs37 Member Posts: 455
    edited January 2012

    Suze- Thinking (and worrying) about you. Just hope you are feeling better. Big Hugs.

    Laurajane- Same thing. Hope you are doing fine this week too. Hugs. 

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  • Suze35
    Suze35 Member Posts: 1,045
    edited January 2012

    Isabelle, I'm here, just lurking. I'm still really weak, so it takes a lot out of me just getting downstairs each morning. But I'm making progress slowly. I have to be ready for our Florida trip and Disney cruise in 3 weeks!! Thank you for thinking of me.

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  • christina1961
    christina1961 Member Posts: 736
    edited January 2012

    Susan,

    I hope you continue to feel better.

    Tina, I used to get my port numbed each time but now I just take a deep breath when they access it.  I have my blood drawn there, too, without any problem- and I just have a regular port not the fancy new ones. I'm glad to have it after they stuck me six times before my MRI last February.

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  • Babs37
    Babs37 Member Posts: 455
    edited January 2012

    Susan, thank-you for the news. I was getting worried about you but I understand completely that you need to rest and get better. Take good care and know that we are all here for you, good or bad. And visualise that Disney vacation!!! 

    Isabelle xx

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

    I never used a numbing cream when my port was accessed.  My chemo nurse was a genius at painlessly inserting the needle. 

     Suze - wishing you strength and healing! 

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  • Babs37
    Babs37 Member Posts: 455
    edited January 2012

    On the port thing, I sooo regret not being offered to put one in before I started chemo. I had 4 AC and 12 weekly Taxol almost all in my right hand. They thought I had good veins in that hand so they prefered that one. Now, even 1 year after, my veins on that side are shot! I have a feeling it is affecting my circulation in my arm and hand and I think it's not helping with my LE. If I had knowed back then what I know now, I would have asked for a port.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Hello Ladies.. tomorrow is my last chemo.. or so I am told. I still reeling from my MRI on the 4th. I had a biopsy done of a "suspicious" area, which turned out benign. WELL-long story short, the benign area has shrunk from chemo. The report stated that it is cancer as well. So no lumpectomy is my thought. I am guessing from conversations with my surgeon that a MX is for the best. Now I am thinking take them both!! The MRI showed "stuff" that seemed to not look cancerous.. I am not taking this with a grain of salt, looking forward to not worrying as much.

    REceived a phone call from that darn BC nurse navigator.. I again mentioned reconstruction and TE.. she said .that wil not be an option with the rads..I finally told her I was not listening to her any longer. I KNOW I can have TE's placed before rads.. anybody have any advise on this??

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

    Lory - regarding having TEs before rads, just talk to your RO first.  I know I am the exception to the rule, I had previously had Mammosite rads, and I am very short-waisted with probably "no room" to work.  But my RO wanted my TE removed, not even just drained, before radiation, because it was covering my heart and he wanted to do radiation at angles that would protect my organs. 

    Many, many women have TEs placed before rads, and you may very well be able to do so.  I think it has more to do with local customs, your specific issues, and the skill of the RO.  But if your heart is set on implants, you really should have that RO consultation before your surgery.  That way, you won't have any surprises.

    Fortunately for me, I had wanted DIEP reconstruction from the beginning.  I had a PS who didn't want to do it.  So I let him proceed with the TEs when I had my BMX and I hated them.  When my RO said that the left one had to go, I was perfectly willing to have them both removed, knowing I'll have my DIEP later this year by my new PS.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Thank you Michelle.. I am looking into every avenue for me at this point..I want what is best for me. I am also looking into DIEP.. just learning that things have changed in the past week have me on the hunt for info

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  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited January 2012

    Cat,

    2 hours is not a problem. Use just around the surface of the port. Mine was a Power Port-but I believe most are similar and have the 3-points. You need just enough to cover that triangulated area, a nickel size maybe? It will not help to do the cath or vein and it absolutely should not sting. You will feel pressure but not burning or stinging. If you do, mention it immediately. It is likely the chemo and may be a reaction to that or the speed at which they are running the infusion.

    I had blood drawn from the port too, but have heard from others that some places like to use it only for chemos because they want to "save" it for that. I had trouble with the blood draws sometimes. I sometime had trouble with not getting blood flow but was (usually) easily fixed. One time had to get something like a clot buster. Several times i had to bend over or twist to get the darn the to start flowing. But still beat numerous sticks especially if you have small veins that like to roll and hide..

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  • laurajane
    laurajane Member Posts: 321
    edited January 2012

    Man! Another chemo bites the dust. If I have said I've been in pain before I now know I had no idea what I was talking about. This new mix seemed to work at first like so many other ones. Again, the lymphedema went down but then bam! Starting friday I felt like Ihad been run over by a truck and my whole left side feels crushed. New tumor in my back makes it hard to find a comfortable position to sleep. All I can do is lay on my back from the pain. My left arm is now as swollen as my thigh. My FC quickly overrode this one again. What makes me so angry is when I do these kick ass chemos this one kicked my butt. Made AC seem like a walk in the park. Then when they don't work it just frustrates me and makes me so sad. The pharmaceutical company hasnt even accepted me yet so now I'm in debt for the $25,000 it's already cost me for this experiment. I wouldn't care if it had worked it would be worth any price. I'm so frickin scared. Trying hard to think positive and so sorry I'm not feeling very strong right now. I feel like I'm going to explode with anger and frustration. I just

    want a little more time, dam'it. My onc is going to see me today, she'll be shocked at how bad it's gotten since last Tuesday. Obviously the strict macrobiotic diet doesn't cure everyone. I've been so strict but last night I had a root beer float after dinner and it tasted so good. I though WTF. Still praying for a miracle.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Oh Laurajane, my heart goes out to you. I know I don't have any words right now, like you have always had fro everyone else, just know are in my prayers. Oh and the BTW.. rootbeer floats are the bomb for lettign your cares "float" away.. well for a little bit. [[[hugs]]]

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  • mags20487
    mags20487 Member Posts: 1,591
    edited January 2012

    Praying for you too Laurajane. 

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

    (((Laurajane))) - Sending positive, healing energy to you.

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  • Babs37
    Babs37 Member Posts: 455
    edited January 2012

    Laurajane-  I am sooo sorry.Cry ((((HUGS))))

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  • TifJ
    TifJ Member Posts: 1,568
    edited January 2012

    We are all praying for a miracle Laurajane. Sending you all the good thoughts and vibes I can muster.

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  • christina1961
    christina1961 Member Posts: 736
    edited January 2012

    Laurajane,

    I am so sorry.  I hate, hate FC. I hope your doctor will be able to help with the pain today.

    Christina

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited January 2012

    Laurajane, Thinking and praying for you!! 

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  • Swanny
    Swanny Member Posts: 147
    edited January 2012

    Laruajane:  I am so sorry.  I hope the doctor will be able to help you with the pain.  Big hugs and I will pray for you......

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited January 2012

    Laurajane, I wish I could help somehow but I have no words, except to say whatever causes this F....BC thing, or whomever are responsible for making this world so polluted, won't get away with it.  They shall be punished one day. Women are suffering big time everywhere, this BC thing has gone way out of hand.  I hope and pray that you have better days ahead and that these bad days shall become history for you very quickly.

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited January 2012

    Suze, it made my day to hear from you.  Gain all your strenth for your cruise coming up shortly, and I hope you have the time of your life with your family on this cruise.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    LJ- I am so sorry this latest chemo has also failed you. What can one really say in the face of such adversity? You are doing everything in your power to battle this beast.Your fears and frustration are entirely understandable.

    Know that you are in my thoughts each day and I am so hoping you can find some peaceful moments and pain-free days.

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited January 2012

    The pain on my neck/head is getting worse day by day.  The Onc. office is trying to get my MRI of cervical spine authorized this week.  I already have an authrorization for CT scan for cervical spine, but I just have some questions if anyone knows anything.  If the pain is just above the neck, somewhat in the head, would a cervical spine CT cover that area too?  I guess when I showed my pain to the Onc. at  the last visit, I had not realized that much of the pain seems to be in the head, therefore, he just wrote the MRI order for the spine only.  I am so scared, so freaked out right now.  I think I feel frozen and don't want to know what is going on, that is why I am not taking fast enough steps to get this thing tested.  I did accupuncture on Sat. for the mascular pain which did not help at all.  The pain has been there for 5 months now, do you think that if it is mets, that I should have taken steps sooner?  I truly hope and pray that this is just arthritis, which is caused by me taking aridimex for a few months.  Aridimex had almost completely destroyed my right hand, I could not type or use my right hand for a few months.  Maybe, and I truly hope that the neck problem is also due to a deterioration of the joints due to aridimex, which was like poison to my body.

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