Calling all TNs
Comments
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cocker---these ladies have given good advice. Nothing but the sleeve--(dang it I know it sux) on that arm. Do you also have a glove? Get yourself to a therapist who understands LE and can teach you how to do the LE massage yourself. If untreated it just gets worse for me. Babs is right..you do get used to after just a couple of days so get that sleeve on you rebel! I have never heard of such a thing that it means the cancer is back....lies and deceit! I am having surgery on May 22 (a lymph node transfer) and am really hoping for some relief from it...hang in there. Everything is better when we know how to manage it
Maggie
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Cocker Spaniel,
Hi. I read your post and agree heartily with Navy Mom. If I were you I'd scour the Internet for a lymphedema specialist or as my MO for the name of one.
Then I"d go to see her or him ASAP. You want to stop the swelling before it continues.
Hope this helps.
Peggy0 -
CNMylife,
I had the same regimen and my onc had me do 4 AC every two weeks and then 12 taxols, weekly for 12 weeks. She said research shows the weekly 12 taxol may offer benefit. She is very data -driven.0 -
Cnmylife,
See this article about report in new England journal of medicine.
http://www.beaumont.edu/health-library/P094240 -
Cnmylife: To date, I don't think weekly and biweekly taxol have gone head to head in a research study. (Weekly has been shown to be more effective than triweekly.) There is some thought that because TN is high grade and aggressive, it may beneit from a more frequent, metronomic cycle - i.e. 12 weeks - which is why I chose that, but there is by no means any proof that I know of (yet) that there is in fact any benefit, and certainly many many women here have done biweekly with good outcomes. I think the two regimens are considered pretty standard and interchangeable. Certainly with weekly, the side effects are less, but it takes longer and involves more frequent visits. It would be worth probing with each doc why they recommend what they do.
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I also took the 4 DD AC but unfortunately due to blood clots in my lungs after the 3rd TX, I had to skip the 4th AC. My MO changed the 4 DD Taxol to weekly and I was fine on it. I didn't find weekly was a major inconvenience but I also think there is less chance of Neuropathy when you are taking the Taxol weekly rather than a DD. I saw a few women with ice packs on their fingers who were taking the DD. I have a little neuropathy in my toes but nothing to complain about.
As for lymphedema. I have that too. For me it was apparent immediately after surgery. The surgeon took 4 nodes. He was not concerned but my RO was. He insisted I see a MLTherapist. She didn't seem to be able to reduce the fluid so I quit going.
I wore a sleeve (no gauntlet) for months during the day. My MO said to treat my arm as I always have and for me, that was good advice. I haven't worn the sleeve for 6 months. I am very careful to check that there is no more swelling especially in my hand/fingers. I don't wear ANYTHING on that arm or my fingers. I don't let BP or blood be drawn on that arm either. There is a difference of 3" on my LE arm in some spots from my forearm to my shoulder. I am not concerned about LE being a sign of BC...as I said for me it was immediate after surgery. I had surgery, then chemo followed by radiation.
Of course, everyone is different so I would keep an eye on the LE and perhaps see a therapist that specializes in LE.
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Ladies, I am going to pour my heart here as I need your attention please. I am feeling those pre-cancer feelings again, which is weakness coming from the core of my being, shakiness of the legs, very weak arms and not being able to really breathe...... I used to describe to my doctors that I was getting paralyzed. I really honestly don't know how else to describe this. I had this at least a year before I got diagnosed with BC. The neurologist had done every blood test possible, including all vitamins, toxic metals, I mean everything. Then finally she had sent me for a sleep study. The sleep study indicated a mild sleep apnea. I got the treatment for sleep apnea, using the CPAP machine. However, before using the CPAP machine, I had started using progesterone cream on my skin (as per Dr. Lee's book) to balance my hormones - The use of progesterone cream took my symptoms away and I was very happy and thrilled. And soon thereafter this episode, I found the lump and I was diagnosed with BC. So I have felt that maybe the use of this hormonal progesterone cream had caused my BC. Now I am not sure.
Well, lately those same pre-cancer symptoms have started again. It happens even if I use the CPAP machine all night. Which means that it is not related to how I sleep or not sleep. That same weakness, that same paralysis feelings. This time I am not using any hormonal cream, no way.
I am suspecting could it possibly be my thyroid? No one can say for sure whether those symptoms and my BC were connected. Are these the symptoms of how hormones or cancer?
Should I get a petscan? My thyroid doc has agreed to do a biopsy of my thyroid nodule, which is something which was not there on the petscan after my BC treatments, and developed about 5 months after all my rads finishedl. I have a 21 mm nodule on my thyroid. I understand from the doc. and many people, that only 5% have cancer of thyroid and thyroid cancers are easily treatable. A very strange thing just happened. My thyroid doc. just called me, thinking he hadn't called me with my results, while he had already had this conversation with me before. Since I have this new onset of symptoms, it was amazing that he called, that I could ask him for a biopsy this time. He said to me "we've already had this conversation before, right?". I said "yes, we have, but it is a miracle that you called, because now I could ask you for a biopsy, since I have lately become symtomatic".
I am not feeling well, ladies. Should I really go ask for a petscan, as I know the doc will give it to me. These feelings are really unbearable. What am I dealing with here? BC or Thyroid Cancer or nothing at all at this time, but my body getting prepared to annonce a recurrence?
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Cnmylife - I had a completely different regime than these ladies. I had TAC every 3 weeks for 6 rounds. Quite honestly, he didn't give me options and I was happy about that. My Onco is data driven as well and I have to just trust his knowledge and experience.
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lovely: sorry you are feeling so poorly. I know of several ladies here who have had thyroid issues coincident with or following BC. Whether there is a connection, I don't know, but it would seem worthwhile to check out the thyroid nodule further.
Beyond that, your symptoms could be explained by many things. I know our first tendency is to think BC, but there is no reason to think that is so. PET scans deliver quite a whack of radiation, so in my view warrant some sober second thought before jumping to that. Have you had a full work-up by your GP? I'd be inclined to do that first and go from there... hope you get some answers.
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I always look forward to hearing from you Luah, so thank you so much. Last time before BC when I had these same exact symptoms, I had such a very thorough workup. In conclusion, there were just two things the Doc said I could have, a sleep disorder or just anxiety. I am in agreement with her about the anxiety, however, I feel it is menopausal anxiety, basically due to very low hormones and I know that most of our problems are related in one way or another, with hormones. Luah, I agree with you totally that PET scans deliver quite a whack of radiation, so I have decided I am not going that route, not as yet. I am getting a biopsy again for the nodule (by the way I had it 6 months back, first one was inconclusive, second biopsy was benign). And I think from tomorrow, I will just take 1/4 Lorazapam in the morning, and see if I can get past those symptoms of weakness, etc. until my body is able to get back to normal. One thing I forgot to mention, is that all this started happening when I reduced my diet to a minimum of 1300 calories, and lost 7 lbs. Before this, I was all okay, healthy as a horse. I honestly believe that it is all related, our pitutiary gland, thyroid gland, estrogen, progesterone, proteins.......... how does one learn what or where the hell is the imbalance, that is a mystery beyond our grasp.
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Lovely - So sorry you are in such a scarey place right now. Hopefully you can get some helpful guidance soon.
I have some of your symptoms right now. I had an ultrasound of neck about a month ago for some swollen glands on the right side. Dr. couldn't find anything interesting on the right side, instead found a 2.3cm nodule on the left. I had a biopsy and report said what it isn't, but not what it is. They don't even know if it is on thyroid or parathyroid! That has me on edge along with bladder/kidney symptoms, sudden hair loss, and neuropathy (more than during chemo). I see my PCP Wednesday and see an endocrinologist at UCLA at the end of the month.
Holding you close in my heart today. Jan
There's a thyroid or parathyroid discussion board here on BCO.
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Hi Jan. Thanks for writing and I am so sorry to hear that you are dealing with this as well. As if we needed this additional nightmare, after what we have gone through. I have the same situation here, hair thinning badly, bladder problems (noticeably more so now than before) and yes, some neuropathy as well. I am seeing a new endocrinologist on May 20th. I called and found out that he does include pitutiary gland and endocrine system disorders. My current Endocrinologist told me he does not deal with hormonal issues, which was shocking as his line of work should include everything. It may need several (even up to 3) biopsies to get any kind of conclusive results. I had to have 2 biopsies last October and the second one revealed it was benign. They say that the thyroid gland is very small, the stuff they take out does not have enough cellular patterns for them to make any determination of cancer. Unless they have enough material which shows them the cellular patterns, the biopsy is useless. I think I am going to wait to do the biopsy until I see the new Endcrinologist. Thanks for pointing to the discussion at BCO, I can't wait to read that. Please keep me informed how things go for you at UCLA, sounds like you are in good hands.
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My onc said taxol weekly is the best schedule for triple negatives because TN is often high grade and the weekly dose maximizes the chance that you catch proliferating cells during the growth phase.
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Lovelyface - So sorry you are having "the feelings". I can really relate to what you are describing! For a year before my initial dx., I kept telling my GP that I was not well, but could not pinpoint symptoms. He wrote it off to stress, as did many of my friends. I rarely complained about my health, so I thought they would take me more seriously, but they just thought I was "losing it" due to a stressful teaching job. My ex "boyfriend" (I am 58, so "boyfriend" sounds so juvenile to me..), who I had "dated" for 14 years, half-kiddingly told me I was nuts. Wow, thanks for the understanding. His attitude toward my actual dx. was flippant and he brushed it off as no big deal; as he put it, "We all have to die from something" - jerk! Hence, he is my "ex". His attitude was for me to have surgery, and put it behind me. (In other words, get through it, over it and start having sex again). Sorry - I am getting off topic and heading towards a rant....Back to topic - I push for tests when I get that feeling now. Fortunately, I pushed for a bone scan when I had severe arm pain last summer - No bone mets, but lung mets were discovered on my bone scan! yep, on the bone scan. I had a CT and bx. to confirm. My onc does not believe in scanning if there are no symptoms. He says a lot of oncs following this thinking - I do not agree. What about early detection? I just don't get it, especially when my insurance is great about paying for scans! So, I say, push for scans - be your own best advocate. Sending my best wishes that your scans are clear.
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Is there anyone on here that has had a true local recurrence? Breast tissue only? No clavicular nodes or chest wall. I had lumpectomy chemo and rads and then boom 3.5 years a lump. It's gone now. BMx and pet scan totally clean but I'm petrified of mets. I did immediate reconstruction last week and feel beat to hell. Chemo will follow when drains out. Any similar creatures out there ?
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Crs319 - I was diagnosed on 3/6/13 with a local recurrence. I finished treatment the first time around in August, 2012.
Docs were surprised because lumpectomy tissue and SNB on 5/18/2012 were clean. I also had done chemo and rads. Scans on 12/1/2012 were clear.
I found the new lump on 1/31/2013, just below the lumpectomy incision line.
I had right mx in March with ALND where they took 47 level 1 & 2 nodes. One was positive.
It's definitely a nasty surprise. I'm doing chemo again right now. I started ny second round of Xeloda and Ixempra today. We are planning 6 cycles of 3 weeks, then rads to the level 3 nodes.
I think there is a local recurrence thread here on bco. I will try to find the link and post it for you.
Hope this helps a bit. All the best,
Phyllis0 -
Sorry to hear this Phyllis. Hope things are progressing well. The calor study certainly makes the extra chemo look like a smart idea. How did they decide on your chemo drugs?
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Crs, I am so glad your treatments for a local recurrence went well and I am totally understanding your fear of mets.
I know it must have been extremely scary to feel that lump after years had gone by.
I am reluctantly going for a rad consult tomorrow because, even after the chemo and BMX I' m terrified of a recurrence or mets.
In your case it seems you have done everything that was needed, even though you were blown away by the recurrence. That is brave and smart.
Now it's time to heal and live each day to the fullest. At least that's what I tell myself.
I know that your post was asking for people with a. Local recurrence but I identified with you so much I just had to write!
Hugs,
Peggy0 -
My doctor agreed to the bone scan, waiting for it to be scheduled. Fingers crossed it's nothing.
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Crs, Thanks for the calor reference. I had not seen it. My MO at MDA, mainly told me that since a local recurrence so quickly is unusual, they plan to treat it as metastic cancer and use chemos in the order of most studied and strongest, starting with Ixempra and Zelda.
The calor study backs that up. Too bad my MO didnt give me the reference. Or if he did I was to freaked out to absorb it. Thank you!
Ix and X are kicking my butt! Partly because I'm a wimp and partly because my bone marrow is still in recovery from last year's chemo. All my counts tanked on the first round and needed 2 neulasta shots. They worked though! This round we are reducing the Xeloda about 10% to try and prevent that.
I'm interested to know what they choose for you. Please keep us updated,or pm me if you prefer.
Phyllis hope there aren't too many spellos. Typing on my tablet with fat fingers because I lost my stupid stylus.0 -
I had a true local recurrence as well, one year ago this May. Mine was also found 3.5 years out from original diagnosis. It was right under the skin but over the implant in the exact same spot as the original tumor, appearing after lumpectomy, chemo, BMX and recon, tenacious bugger. The new tumor was 1 cm, no nodes, so they took out my implant and the tumor and I recieved a course of radiation, which I had not had before. Just last month I got my final implant put in.
It was a horrific shock to say the least. I think worrying about mets afterwards is inevitable. Sorry that you all have been through this as well...
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Wow minxie! I was mad that mine was back in the same spot after the lx "how can that happen??" I would have compeletely flipped out if it happened after bmx also! These are tenacitious little buggers as you say. I also call them a lot of things including nasty bastard f***ing cancer cells....but that's usually when I'm alone.
Phyllis
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Just getting caught up on all the posts. Looks like I missed a birthday! Happy belated birthday Karen!
Maggie-I am excited to hear how your surgery goes!
CS-I hate wearing the sleeves, but sometimes I feel like I really need to wear them. I am suppose to wear them on both arms during the day, but I don't! When I do wear them my arms feel so much better. It is amazing how tired heavy lymphadema arms can make you!
So I had my follow up, my last one with my MO:( He is retiring, I am happy for him, sad for me. He let me off the hook as far as scans go, he said once a year (basically what my insurance pays) so I will be due in August. Now waiting for tumor marker results.
I need to get it together. I do not know what is wrong with me but I have no motivation. Today I finally picked up the phone and scheduled an appointment for pt for my arms and chest tightness. I need to eat better. WHy don't I when I know it is so important? I feel the same way as you do Stupidboob! Your rant could have easily came out of my mouth, in fact I think it has before! I basically feel beat up. Not much to do except move forward, right? I wish I knew how to put cancer in the background, it seems to be my daily main focus and I am so done with it.
Happy day to all of you!
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Bak - I hope you get your mojo back soon! Plan something fun for yourself in the near future.
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Liz1973 – Just catching up on several pages worth of posts and wanted to respond to your radiation concern. Perhaps you are not aware that some centers have x-ray tables where you receive your radiation treatment lying on your stomach, rather than your back. There is an opening in the table and your breast dangles down, thereby minimizing (or maybe even totally avoiding) radiation exposure to the heart. You may want to check around and try to find this option. All the best to you!
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Attention to the ladies who have had radiation. I was told that most the time you have to have an MRI so that they can see where to shoot you at. OMG not another toilet paper roll..........I can't do it. Please tell me if this is the norm?
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bak94 I am so sorry you are dealing with all these feelings too...........just plain SUCKS!!! I am on my own nerves and that is bad. As far as the eating.....WOW I HAVE BEEN HORRIBLE. Every night I tell my body how sorry I am but then darn if I don't do it again the next day. Sometimes I eat because I am hungry, sometimes because I am looking for anything with taste and/or to ease my tummy and other times just do it to do it. Bored, nervous, just can't take it anymore eating. I think where I am right now (and I know it is stinkin' thinkin') but it is what it is.....I just feel like WHY BOTHER!!!. I did all the things I was told to do and it came back anyways. Just when I was finally getting to where cancer was not my every thought in the day.......it came back.:(. My mind wants to do alot of things but my body says nope not going to do it. I have been an emotional wreck these past few days and my body is just doing things that unless you have endured chemo you can never understand nor can it be explained. It is almost like we are alien to our own bodies. If you ever want/need to talk just let me know and we can set up a time. Hope you are feeling a bit better.....
{{{comfort hugs to you}}}0 -
Stupidboob: I didn't have an MRI prior to rads, but I did have to have a special chest CT that they did that took longer than a regular CT did, as they mark it all in small quadrants. I asked afterwards if it was all clear in the hope they saw nothing else pop up, but was told it was not that type of CT, it was only for markings for the rads. It was after that was done and plotted that they did my little dot tattoos. Just wanted to answer your post about the MRI. Maybe different places use different tests, but mine was a CT.
Wishing you, and everyone else on this thread - the best.
Linda0 -
Bak I know how you feel. I have no motivation whatsoever. I do what I have to do but with a complete lack of motivation. I don't want to go anywhere and I don't really even want to see my friends at the moment. What am I waiting for, well for it to come back I suppose. Every little ache or pain has me wondering. I'm irritable and uptight to it seems like everything all the time. My doctor wants me to have another CA-153 test to see if it is higher than last time and I am dragging my feet. I don't want to know yet I think about whether it has gone up all the time. Make sense, nothing does to me at the moment. I know I should give up the smokes cause I have a cough and I should give up sugar but I just don't seem to be able to or want to. I am so over this cancer shit. I can't even tell my family because they worry. Now this flaming lymphoedema. My workmate has just undergone a lumpectomy with no nodes. She just had to have the lump out and three weeks of radiation and because she is receptor positive she even gets to take the pills for five years. I am not normally an envious person but when she text me and said she is sore I uncharitably thought harden up girl. Thank god I didn't text that to her. What the hell is wrong with me. I am sitting here looking at the most beautiful sunset and normally I would love anything like that but I can't even enjoy it. Cancer sux big time. My god what a pityfall post perhaps its me who needs to harden up do you think.
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I'm still pretty new to this whole cancer thing, and mine so far has been easier than a lot of you, lumpectomy, one lymph node, but I am going thru chemo and radiation. I never understood cancer before, and now I know that unless someone has really taken our ride thru this, they don't really understand what we go thru. The feeling that you are watching your life from the outside, the terrible side effects from chemo, the hair loss that everyone thinks is ok, etc. etc. But this is what makes this forum so special, we have eachother to talk to and vent to and learn from and I really love that if I feel scared or nervouse or just want to see whats going on, I can log on and instantly get answers and feel better. So thank you to all who post!!
I hope everyone has a good day today.
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