Calling all TNs
Comments
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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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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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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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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..0 -
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.0 -
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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Praying for you too Laurajane.
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(((Laurajane))) - Sending positive, healing energy to you.
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Laurajane- I am sooo sorry.
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We are all praying for a miracle Laurajane. Sending you all the good thoughts and vibes I can muster.
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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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Laurajane, Thinking and praying for you!!
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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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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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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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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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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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Lovelyface, I really have no idea about the Aridimex but if it's as bad as you say I don't see why it couldn't be. It could very well be a mix of Aridimex and arthritis. I'm sending positive thoughts to you!!!
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LJ - I am so sorry to hear how hard this latest treatment has hit you, but not the FC. Totally not fair for such a vibrant, determined lady! Hoping your onc has some options that will give you some relief... and give you the time and quality of life you so richly deserve. (as for that float, it is a root vegetable, isn't it? I always thought so.
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Laura, my friend, I am so sorry to hear you are in such pain, and that you suffered so for a treatment that failed you. Screw the diet - eat what you want, when you want. There comes a time when simple pleasures are more important than a diet that likely won't do a darn thing for you. I hope your doctor is able to provide you with pain relief. If she doesn't, please seek out some palliative care - different from hospice in that they work to control your pain while you are still in treatment. Please do this, for your sake.
I am going to share this, even if I might scare the newcomers.
I know my time is short. Much shorter than I'd like. I am taking time now to come to terms with that, and finish/do the things that are important to me. I am cross stitching. Writing letters. Completing the book "The Story of a Lifetime". Getting pictures in order. And making sure I see those I love while I can. I have my trip planned in a few weeks, a cruise and Disney. I wish I felt well enough to eat the foods I want, and drink the wine I want, but this pneumonia still has me feeling like crap.
If the Halaven isn't working, I am going to seriously consider going into hospice. My biggest fear is cycling through chemos, feeling like crap, not having them work, when I can get the same result in time while feeling human. It is a hard choice, and I haven't made it yet, but i don't really relish the alternative.
Laura, please get some help with your pain, and then sit in the sun, wind, and rain with your loved ones, enjoying each moment you share with them. Eat, drink, dance, and know you fought with all of your heart and soul. I am so sorry you are suffering.
Susan0 -
Laurajane and Lovelyface, I'm thinking about you both and just wish there was something I could do to help. I am so sorry that you're feeling so awful, worried and scared.
Phyllis
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Susan, wow! Yet again, I have to say this. You are an amazing woman, thinking the way you are doing right now. Putting everything into perspective and this is nothing ordinary, this is your life you are putting into perspective, you are one heck of a strong woman! While you are thinking on these lines, please don't ever forget to think that eventually, God or the higher power or whatever you believe in, is still the one who makes the final decision. There are definitely miracles happening, not just in story books, but in real life. I have witnessed quite a few myself. Believe in miracles, because they are for real and they do happen. Pray with all your heart and soul what you want for yourself to spend more time on earth and then sleep with those thoughts that nothing will happen to you as it just possibly cannot happen. I am saying all this only because since 1987 I have been in search of spirituality taking at least 14 trips to India chasing holy men, gurus and this is what my life has been all about. Therefore, due to their techings and my experiences of amazing miracles, I know that things don't happen only because a doctor says so, it happens because the higher power or God or nature has it destined for you. Just listen to your heart and get very close to your inner self, you will get your answers. I think the pattern for me, in case this was to happen to me, would be sheer panic at first, then coming to terms with it, then looking forward to facing my creater, or at least feeling that there is always always a good reason for everything that God does. I am sorry if my email offends anyone, talking about God and the higher power, but I feel like I want to say what I have learned from my experiences. Susan, I hope you heal and get back to your wonderful life very quickly. Remember this saying "With God, EVERYTHING is possible".
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Lovelyface..not offended at all..it is what it is...and whatever it takes to get us through this...
Suze and LJ...I agree with your thoughts...maybe minimizing those treatments and feeling better...I know that at some point we may have to just give up the treatments..especially if they are making us go through pure hell..no quality of life there....
Love you guys...and thinking of each and everyone of you every day....
I HATE CANCER
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Lovelyface - the c-spine MRI shows the back of the brain. Do a google image search to see what I mean.
LJ - my heart hurts for yours. I'm sorry you are in such anguish. I hope you find your silver bullet.
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I have a high hemoglobin. 15.9 - anyone else ever have this? Mote blood test to come, gave up after 4 sticks today.
Wishing everyone a bright tomorrow.0 -
LJ and Suze - wishing you both all the best as you face decisions about treatment. You are both in a place noone wants to be and we all wish it weren't so. Whatever you decide, we are here to support you.
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obxk, I have this as well..my primary doc discovered this, but was unsure about it. Did you get any advise from your doc??
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LJ-So sorry that you are in pain and that another chemo bite's the dust. My heart goes out to you.
Suze-I hope you feel better for your trip. Please don't hold back on what you post, your posts are always heartfelt. I think everyone can learn from not putting things off, including those without cancer.
Lovelyface-Your post was beautiful-thank you!
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This is very hard to read and experience. I have nothing but respect and love for the both of you.
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Hello suze35 (Susan)
I have been catching up with my reading of the posts on this thread and I was sorry to read that you are feeling so unwell. I have grown to admire you so much through your posts on this thread as well as on Calling all TNBCs in the UK. I am so terribly sorry to learn that you are feeling so weak and unwell.I just wanted to tell you that you are in my thoughts. I can understand that you might want to take a break from chemotherapy. It takes such a dreadful toll on the body. Concentrate on looking forward to your trip with your family.
Something has got to happen with this awful breast cancer. I get so upset to read about so many young women, with all their life in front of them, being diagnosed with TNBC.
From here in the UK on behalf of everyone on the TNBC UK thread, our warmest thoughts and wishes are coming to you.
Fondly
Sylvia0 -
Obxk - thank you so so very much for telling me that the C spine MRI shows the back of the brain. This helps me with one short doctor visit. I am not sure why I did not think of googling in the first place. Thanks again.
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