Calling all TNs
Comments
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Did you get a lymphodema expert - what did she say? Do you feel better?
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Yes, Claire, I did! I have a bit of swelling in the back--told my dr months ago and he said it was nothing. She did a lot of stretching and measuring. When she was done she wrapped me up and sent me home. I go 2 x a week while they battle it out with MediCal. It's great--loosens up what's tight. I had a substitute today because the other PT called in sick and the one that I saw before is better at it and more experienced. I go again this Thursday. Just want to get full use of my arm again.
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Lovelyface- I had an awful time on AC but Taxol was a breeze. I only did 6 out of 12 but it felt so good to feel so much better. I had the up all night from the steroids the day of and after then just a little tired. I know it's rough but you can get through it and then I hope it is smooth sailing for you. I'm sending positive thoughts your way.
MBJ- I didn't realize you were having problems. I hope the PT helps. I expressed concern to my BS because I had so many lymphnodes removed and he gave a 'scirpt for the sleeve but said to just wear it when I fly. I have a general tightness and aching in my arm but thought it was normal after surgery.
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A smile for all of you this morning! I hope this doesn't offend anyone it sure made me smile when I read it this morning.
Chapter #1 A buddhist monk goes to a hotdog stand and asks the vendor "Make me one with everything"
Chapter #2 So the buddhist monk paid for the hotdog with a $20 and the vendor put it in the box. The monk says, "Hey, Man, where my change?" and the vendor says,"You should know Master...All change comes from within...".
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LauraJane, that did produce a smile.
And the smiley face reminds me that yesterday before I had my first Rad, and the technicians were drawing all sorts of lines on my little breast, they promised they would draw a smilely face. 0 -
Titan and Heidi: I know exactly what you mean. I've been in a funk this week too. Just stressing over little aches and pains. Always terrified the other shoe will drop. So conscious of the fact that 1-3 years post diagnosis is our big risk period. Feel like I'm entering a dark zone. Can't talk to DH about it - he just doesn't want to go to negative thoughts and, frankly, neither do I. Wish I could switch it all off. Really sucks.
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I don't know where you are located, but they are accepting enrollments, not lotto at Stanford RIGHT Now, and will take up to 80 are at 56. call Meredith Mills 650-724-5223. Parp #3 1-877-827-3222, Randomization starting at UCSF, Julia 885-7331, Diane Davies UCSF 353-7857 (all 415)
I-Spy trials 2.5 cent. needed call Julie, Phase 2. I think this needs mets.
Sorry if this is reduntant or not right for you, but I wanted to give you some info I have received recently. Good Luck! k
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ARE you taking the EMEND?
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Lovelyface, are you taking emend, dexamethasone and prochlorper? I also think Xanax or Lorazapam helps alot. Hang in there, my thoughts are with you.
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As new as I am to this, I even remember PauldingMom's messages and I am devastated to hear that her cancer has come back with such a vengence. My God, it is so scary, this tripple negative. Sometimes I wonder how in the heaven's name did I get into this much trouble. I never knew my life would turn out like this. I remember that Lisa was also a grade II like mine. However, I don't remember what treatments she went through. May God shower her tons of grace as she fights this and gets back on track.
Thanks to all of you who responded to my earlier post, which was filled with apprehension.
Vina
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Yes, I take Emend, dexamethasone, Lorazapam and compazine. Last AC, I did not take compazine as I think it made me feel even sicker. Also did not take dexamethasone, also made me sicker. Depended on Emend for 3 days and then Lorazapam, which made me go to sleep within 5 minutes of taking it.
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If it makes you ladies feel any better my breast surgeon said that most tri-neg that do not have any node involvement do pretty well and make it to the three year mark.
Breathe, rem. low-fat (blueberries and broccoli), take your vits, work-out, and most of all PRAY.
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Fighter_34 - I am crying right now, as your email has made me feel a little better. Ever since I heard about PauldingMom, I was freaking out. I made an appointment with my Oncologist to see me sooner than Monday, as I have a million questions to ask him. I did not have any node involvement, thank God. Does anyone know anything about TN's who try to preserve their breasts versus having bilateral mastectomy. I have done a lumpectomy but have issues in my right breast, which did not have cancer, but scary cells. They recommended yearly MRI's to check.
If anyone has information about how to decide on having bilaternal mastectomy - please give me info. I feel good about my cancer breast which has clear margins and will have rads.......but what about the other one which has all these weird altered cells? What to do? If one goes, they both go. Like I said I have a million questions and I don't know where to get my answers.
Having TN, what assurance is there that having bilateral mastectomy will prevent this from recurring somewhere else? I am so confused.
My love to all you lovely souls!!!!!
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Lovelyface~ There is no "right answer" regarding bilat Mx vs lumpectomy. I had a bilat. I'm happy with my decision. Many here have had lumpectomies and are also happy... I don't think that bilat vs lumpectomy made any difference for PauldingMom. It is so sad to read about these cases. Terrifying too. But, remember, for every recurrance, there are so many more who go on to do just fine.
I'm also in a funk.
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This may sound a little morbid. I don't want it to, but I've been trying to figure out to explain what my BS said when the decision was lumpectomy or mx. If I opted for the lumpectomy, my chances for survival were no more or no less than if I opted for an mx. Because you will be checked very carefully every 3 months for the next couple of years, the chances of them finding the recurrence in your lumpectomy breast are high. At that time you would choose an mx, and have the same survival as one who opted for the mx right away. Did I explain that ok? Your choice of a lumpectomy didn't hurt you at all.
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This rollercoaster ride is driving me insane. So Friday I'm told I can be in the trial. Yesterday I'm told it's a lottery. TODAY! I'm told I am not eligible because I don't have mets not quite stage 4 but almost. Onc blew me off today I was supposed to start the chemo tomorrow but she isn't sure I can get the o.k. from insurance because I don't have mets. So I was told that they all thought I should have mets by now but since I don't I guess I basically have to wait until I DO! My God I can't believe it. It was a miracle to have 14 out of 20 lymphs no benefit from the chemo I have already received AC or Taxol for this aggressive cancer and now what? I'M SUPPOSED TO JUST WAIT? BECAUSE I WILL PROBABLY HAVE METS SOON ENOUGH! What in 6 months so insurance will cover it? My God I just can't believe it. Please no one consider ever moving to Indiana. My insurance only covers me here in good old Indiana. Wish I were rich and it wouldn't matter, would it? I think that what I have now might be a migrain I feel like not only my head but my whole body might explode with pure rage, sadness and I'm so scared. Love you guys. Thanks for the vent. 0 -
Grr
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I meant to add clean pet scan with 14 out of 20 lymphs positive. When I was diagnosed last May they thought it appeared that I had one lymph positive at that time. This is f***ing aggressive. I am so scared. Wah! Wah! Waaah!
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OK feeling blue too. I was just told as I am (so far) node negative, that I can't get radiation if I have a masectomy. What?????????????? It increases my odds by an additional 10%. Who made that decision. Only radiation with lumpectomy. to equalize the odds.I am waiting results on my BRAC1-2 tests to decide about masectomy. I was so concerned for you Lovelyface, it sucks that they can't find something more tolerable. I called my docs to see if they have a triple neg support group and was told no, not enough of us. What???? Thank God for this and can you try xanax? K
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Because the mastectomy is an aggressive approach to a node negative cancer, even TN, you do not need radiation. You've eradicated all the tissue. I was extremely excited that I only needed chemo and would be saved from rads. It's a widely accepted approach.
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Pinkpee- Thank-you. I completly forgot about the Xanax prescription I got last May. Thanks for reminding me. I was originally scheduled for radiation after my masectomy. I was told to have chemo first instead because of all of my positive lymphs. Now I am just kind of lost. I am going for a second opinion on Friday up in Indy. I pray it's a more caring onc. THe one I have now is so cold and non supportive to say the least. She has 10 minutes and if I have any questions they are basically to be saved for next time.
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LJ- some oncs are more nurturing and supportive than others. I think it may be time for you to find one who better suits your emotional needs. You do not need the additional stress of a seemingly uncaring doctor in addition to what you are already facing.
As for the trials- that is the way the BC game is played, and you are so right to be upset over it. For God's sake, it's your life we are talking about here. Nonetheless, there is probably very little you can do about it. Pink October is all about the "survivors" and finding a cure (yeah, right) and often, the Stage 4 gals feel very left out. I spent some time discussing this very issue on another thread in here.
However, when the subject comes to Clinical Trials and cutting edge drugs the tide seems to swing in their favor. That is, perhaps, only fair. The real kick comes when, as you are, you fall into the gray area. I totally understand your rage and frustration; I'd feel the same.
It's not unlike dental care for kids. (I realize the two are drastically different in consequences but the "methodology" is the same). It seems so wrong not to cover something prophylactic when there is a high probability of avoiding future complications caused by *not* giving the treatment. Insurance seems to want to cure the problem but not the disease. In other words, too little too late.
Take a Xanax. It's the best thing for you to do right now. "Better living through chemistry" as the saying goes. Take it to mitigate this rollar-coaster of emotions you are so rightfully experiencing.
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So sorry I can't catch up on all the post, and I don't want to freak anyone out. Just want you all to know that I am doing well and will complete brain radiation next week. Then I will do Chemo. for the rest of my life. It sucks but doable.Please pray that I win the lottery to get in on the Parp (sp) inhibitor program.
Pink hugs Lisa
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PM- consider yourself prayed for. Hugs back.
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Paulding Mom:
So good to hear you are doing well with this nightmare that blindsided you. I am in Marietta, GA and get my treatment at North Georgia Oncology Center (right behind Kennestone Hospital). THey have different offices scattered around. They have the Parp up there and are using it on a Compassionate Care basis. If you need more info, my onc's name and number, etc., just pm me. I wish you nothing but the best.
Linda
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LJ - I wanted to scream with you when I read your post. I just don't understand insurance companies!!!! Take that Xanax and maybe a glass of wine too.
Lisa - good to hear from you (((hugs))) and I'm praying that you get in the lottery.
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Ladies..we all seem to have alot going on right now...not good things...I freak out for all of us..but...you have to remember..reocurrence is NOT just for tn's..it can happen to all breast cancer patients..remember tn's have a higher rate until they are 30 months out (based on my chart that I printed off and is now dog eared and wrinkled cause I look at the stupid thing so much)..It is so scary...so dang scary.
LJ..and the rest of you..just be proactive...know your body...you guys know if something is different...be a pest with your onc...demand tests if you feel you need them. At this point we really can't think it is a pinched nerve or a pulled muscle or "nothing"..we just can't do that...and don't them blow you off..you KNOW how you feel inside.
I read on line somewhere..that if you feel good...and feel healthy..good chance is that you ARE..take that and run with it..not everyone reocurrs...but it just sucks that Paulding Mom did..I hate that with every feeling in my body...
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Lisa: (((Hugs))) to you and I will pray that you get into the Parp program.
LJ: I hope you can get the Parp also. It sucks that it is so hard to get the Parp, when it seems to work so well for TN.
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Titan's post is right on the mark. But one thing I wanted to add to it and it is mainly for the new gals just joining us and getting ready to embark upon your treatment, and that is that it's so very important that you be proactive right from the start. It's difficult when you are still in the midst of shock at your diagnose, but you must, being triple negative, make sure you are in the hands of an oncologist that is very familiar with triple negative breast cancer and its agressiveness and how sneaky it can be. If your breast surgeon does not send you for a MRI to make sure there is no small cancer hiding in the breast(s), DEMAND IT. If prior to treatment, your onc doesn't schedule for a PET scan (not all insurance will pay for it if you have no nodes), then a CT of chest, abdomen and pelvis should be done, along with a full body bone scan - DEMAND IT. This is the only way they can be sure that nothing is quietly lurking somewhere else that a mammo and an US will certainly never find. These tests prove very useful down the line should you need to have further scans after treatment as they will be your "baseline" tests. It is your right to have these tests, and I know I wouldn't want to put my life in the hands of anyone that would not do them. I had no choice, they are just part of my onc's normal protocol - and I am so very thankful that they were. Of course, none of the tests will guarantee that I never get it back, but at least I have the knowledge I didn't have anything show up prior to treatment.
I'm off my soapbox now - God bless us all.
Linda
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Linda..I had no pet scans b-4 treatment..chest xray..yes, but nothing else besides the usual blood tests and heart tests b-4 surgery and treatment..an mri was done of my breasts plus numerous mammos.. b-4 rads. I'm 20 months from treatment..do you think that I need a pet scan now? It is always at the back of my mind They just don't do that at the Cleveland Clinic...if I would have had just ONE node involved I would have had the entire tests..what do you think? I feel really, really good right now..but sometimes I freak anyway.
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