Calling all TNs
Comments
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Thanks ladies, I called my oncologist and she quickly faxed me an oncology panel to do tonight. You know Kathyrnn, I have been wondering about this pain for years now, I think it first started in 2008/2009, and then I was diagnosed in 2010. During the treatments and afterwards, the pain had disappeared. It had come back for a month or two in Janury/February, 2012, but it had disappeared again. It is the most horrible pain and does not seem to be mascular. I have repeated my symptoms to doctor after doctor, lately I thought it was related to my thyroid. Just this afternoon I am realizing it is possibly coming from the back of my breasts towards the backbone....... this is my latest observation. It could be my neck where I have some deterioration of C5 or something. I did see a back doctor not too long ago, and he said my back looked just fine. This is almost like a burning and I feel I can't breathe when it comes, not only my hands but my legs feel weak too. One doctor had told me if it was coming from my neck, it shouldn't affect my legs. Another doctor had told me that it is possibly anxiety. The symptoms sound like anxiety, breathlessness, weak hands and legs, but the pain, what is that, and that is unbearable. I am not sure if I will ever be diagnosed for this thing, as I have no faith in any doctor out there who can diagnose this. I have seen way too many doctors and explained way too many times in 2008 and 2009. Since I was diagnosed in July 2010, I feel this is related to that ugly thing. I will keep you posted.
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Lovely:
Burning type pain is generally nerve pain. Sounds as though you may have a pinched nerve that triggers off from time to time. Could certainly be from a degenerative cervical disc. Have it checked for peace of mind certainly, but try not to panic (something I have yet to accomplish, I might add). Wishing you merely a pinched nerve....
Linda
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Lovely, I understand your fear, but we know our own bodies and know when there is something wrong. Hopefully it is just a minor problem like a pinched nerve that can resolve with antiinflamatory meds. Have it checked, but try to remain calm. And try not to think that because some of us have recurrences, that it's likely to happen to you. Chances are it won't.
I'm curious to know if skin sparing creates a better chance of recurrence happening. My PET showed some skin involvement prior to chemo, but looked completely clean afterward. ( I swore i had IBC, but surgeon insisted no). went with the bmx with te's, now the beast is back. How about everyone else...have you noticed any correlation between skin sparing recon and loco/regioal recurrence with those that you know? I guess they call it skin mets and chest wall mets.
I just finished my 2 weeks of xeloda with minor foot discomfort, not much more than mild nausea for an hour or two after taking my pills. now I'm on my week off. How long will it take before I know that its working, and how often are PET scans typically given?
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slowloris, sorry dear, I haven't read up on correlation between skin sparing and skin mets. I had a lumpectomy. I have only done 2 PET scans, once after surgery before chemo and once when my doctor "panicked" about my symptoms in 2011. So far only twice Glad to hear that xeloda wasn't too bad. I truly hope that you get a clean PET scan very soon. It may be given yearly or depending on symptoms.
For myself, my questions are, if my pain is related to a nerve pain, then why doesn't anti-inflamatory drugs help with the pain? If it is my neck, then why do I get pain also on the sides of my pelvis (maybe ovaries) and my legs are shaky. And if it is back pain, then why don't I have any pain at all right now, I could run a marathon, my back is very fine. I truly feel that this is not mascular.
I feel that when my estrogen level is very low, then I can feel my central nervous system and every single nerve hurts and when my estrogen level is normal, then there is no pain. Has anyone felt any correlation between low estrogen levels and disturbances in your body? My doc told me not to eat soy. I have researched on the internet many times what to do to bring the estrogen level up. I have taken flax seeds and they make my breasts hurt, maybe too much hormones. Not sure what we can do to balance this devil thing called hormones.
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Kathy don't blame yourself about sending us a link. Quite honestly I don't find any of them very good. It's all either doom and gloom or 'hey we've found a cure for TN's' or 'break through in TN breast cancer' but ones we never get to see or hear about again. i just wish they would all feck off with their rational's cause half of it is crap. Next month it wil be AC that is the bad guy or some other drug or food we have been taking/using. All we can do is keep our fingers crossed and hope for the best and if that doesn't help we could always have a tree through our roof for Christmas!!
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Annie, I agree with your feelings! The oncology surgeon very honestly told me that oncology isn't an exact science, it is basically guessing what might work. So for now we all just keep on fighting and praying for a cure.
Lori - I had a lumpectomy, so I don't have any info to help. The one person I remember who had a horrible time with skin mets was Inmate, but I checked her bio and she initially had a lumpectomy.
Lovely - no pain meds help with nerve pain. My herniated disc left me with chronic sciatic nerve pain. I can take anti-inflammatories and narcotics for the pain but they don't give very much pain relief. I do take gabapentin (Neurontin) which is an anti-convulsants which helps with neuropathic pain. There are days I want to gnaw my leg off!!!0 -
I also take Gabapentin for 3 herniated discs in my neck...not sure if they help or not...still have pain when I lay down but scared to stop in case it gets worse.
Does anyone here take Allopurinol for too much uremic acid? Just curious about any SEs.
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Cocker Spaniel,
Your post helped a lot. After reading that article my fears of recurrence/metastasis were reignited.
It's true that these small research studies, hopeful or scary, come and go like the wind. I forgot that! I guess if they stop giving taxol or taxotere to all newly diagnosed tnbcs then maybe I'll start worrying again.
Nonetheless, it was good to have the article to show my onc at our next meeting.
Peggy0 -
Kathy- I've had chronic sciatic nerve pain for years as well. It did get better during treatment, mainly because I was resting 80% of the time. Then I got the post chemo neuropathy. I saw a pain dr for years for injections, etc. What I am leading up to is this- I now wear a Butran patch which delivers a steady 5 or 10 mcg of hydrocodone (norco). I can now walk again after 2 yrs without feeling like I"m walking on glass with charred feet. I have no side effects, no sleepiness with the patch. I wish he had offered it a year ago, but apparently they have to go thru a protocol of treatments. (If they won't go straight to butrans, ask for a Lidocaine patch...helps too)
Also wanted to mention that I had like 9 MRIs to check for terrible aches and pains that I was sure was a recurrence. Probably a combination of fear and the poison leaving my system. Go ahead and have everything checked out because you have to have peace of mind, but know that you're probably OK
Hugs and love to those still in treatment
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Schatzi - my DH has taken allopurinol for at least two years. He hasn't complained of any SEs.
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Lauren, I am in the same boat as you. Had the chemo before surgery and rads, with no complete response. My tumor went from 6.2 down to 2.3.. So I keep an eye on symptoms. The difficult thing, I have lymphedema in that breast- lots of bumps and hard spots, so it's hard to do a self check.
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Hi ladies.
As you can see from my signature below, I am recuperating from surgery that was 2 weeks ago. I've been lucky post-surgery; just some discomfort the first few days. I feel very fortunate that my PS was able to save my nipples and put the silicone implant in right away. I am happy with the outcome (I call it my 'silver lining' in this yucky journey).
My onc appt yesterday made me realize that the hard work is about to begin. I had been feeling pretty good and admiring my 'foobs' recently, but the onc appt yesterday has put a cloud over my head today
. I have to decide whether to move forward with TAC (includes adriamycin) or TC (includes Taxotere). I know TAC is more toxic to the heart and can be a more bitter pill to swallow, so to speak. I am considering the Taxotere route. 6 rounds, 3 weeks apart. Any advice?0 -
LuvRVing..thanks for the info...weird thing...didn't have any gout symptoms (altho with Arthritis it's hard to tell) but my blood test showed the uric acid too high.
Have been on Allopurinol for 6 weeks and now my index finger is HUGE...with bony bumps as well. Thought it was kinda funny that it appeared after I started the meds. Have no idea how long my PCP is going to keep me on this. I assume until the blood test shows normal. Sure didn't need ANOTHER pill
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Doglover2013 - Do I understand that they are no longer giving both, TAC and TC? You have to pick one over the other? Really? Just my opinion on the Adriamycin, the red devil. My nurse had shown me the numbers at which it is toxic to the heart. The amount I received was no where near that number, so I was satisfied with what she had shown me in 2010. They didn't even want to send me for the EKG before the procedure, but I insisted and got that done. I don't have any heart issues after the treatment, it is all fine. Did you read the article which was posted by Kathyrnn recently? Please do read that before you make your final decision. I will try to find the link and post for you in a minute.
I am just coming back from seeing my Oncologist - she said my bloodwork does not suggest recurrence at all. She said everything is perfect, whatever pain or discomfort I have is not from a recurrence. She mentioned that maybe I should take effexor for hormonal issues or get myself checked out for other diseases. She told me to eat some estrogenic foods, but cautioned against it strongly - that even though this time it is TN, danger is it comes back estrogen positive. I am happy to know it is not BC, but not happy that I am suffering without any answers. Whatever it is, it is pointing towards some neurological type thing - sensitive central nervous system with pain, off and on, vision problems, memory problems, fatigue, weakness. I will work on this and am seeing a neurologist sometime in July. Thank you God for a good day today, didn't hear anything horrible. Onco. is convinced beyond dought that this is not pointing towards a recurrence and I am gonna take her word for it, this time.
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happy news Lovely!!!! I hope you figure out what it is soon though!
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Doglover2013 - This link has information - not sure whether to believe or not, but something to ponder upon when deciding your treatment drugs. It is just a stupid study out of the million theories.
http://news.vanderbilt.edu/2013/03/breast-cancer-study-explores-therapy-to-slow-recurrence/
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Doglover - I chose TC over ACT - the doctors gave us a choice of 3 routes, both the surgeon and MO agreed we were making the right choice for me. The ACT from everything they printed for me gave me 4% better chance of being recurrence free after 5 years. I don't think there are any right or wrongs, it was a choice I discussed with my husband and doctors and decided that TC was right for me. I would say get all of the information you can and make the best choice possible and don't look back.
Good Luck to you.
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Thanks GoWithTheFlow - The Onco. talked very positively about TN, she said that I was almost at 3 years (to be exact on July 20, 2013), and she said it is wonderful. She is taking it from diagnosis. She said my numbers were amazing on the blood tests, but then I told her in 2009, they were amazing too, nothing out of range, and 6 months later, I was diagnosed, so ???? I gotta be happy TODAY, we'll see what tomorrow brings. Hope everyone is having a good day today!
When I was freaking out yesterday and crying with the pain, one co-worker told me to medidate, looking at me with suspicion that I am screwed up or that I am too "negative". When I told her, I already meditate each morning for 1/2 hour, her advice did not stop there, then she said, do it in the evening too. She meant well, but that was pretty irritating. Another one told me to be happy, always smile. I swear, I am a good person, so I never wish anyone bad, but soemtimes it is hard, and I feel like saying just go through this and see if you can smile and medidate. So irritating.
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People just dont know what to say. I think unless you've been through this, people just don't get how we worry about reoccurance. Since this has hit me back in December, my motto has been One Day At A Time. I just cannot deal with more than that. ((HUGS))
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Lovelyface, Its true, people just dont get it. I dont talk too much in front of people cause Iknow theyd think i was making a big deal of things..... they dont even want to hear about triple negative. To the average person, breast cancer is no big deal, easy to beat, lucky we got this and not a different cancer. IT MAKES ME CRAZY TO SAY THE LEAST....but I just stay quiet and deal with things on these forums.
People say the weirdest things to me, my father in law told me "Well, its something we all have to go thru at some point in our lives" ( and i was like really, I'm 48 , I would have been happier to get it later after my kids were raised ) my sister in law said , even after i told her triple negative, agressive , unpredictable, blah blah blah, oh well you'll go thru a rough time, but you'll be fine....Really?? my doctors cant even tell me that....hahahahahha I can go on and on.........................It makes me think about things I've said to people that have been sick. I think I have mainly listened and offered help but I will certainly be more careful in the future...................................
We can only do the best we can and pray we beat this monster. Try and stay strong. 0 -
Hi everyone, I am 36 and was diagnosed with TNBC on April 12. After meeting with some docs 20 miles away I decided I needed to have my treatments much closer to home. It took a while but was finally able to secure an oncologist and surgeon (whom I both really likeh) very close. In fact the oncologist is less than a mile from home.
I was scheduled for a right lumpectomy with sentinel node biopsy on 6/6. The last imaging that was done was April 16. Went into the breast center to have the wires inserteed and when they did they discovered that it appears the cancer has grown along the tracking of the biopsy. Awesome! Surgery cancelled. Don't know the exact size yet.
Met with the oncologist that afternoon and started chemo yesterday - Epirubicin and Cytoxan - dose dense for four treatments likely followed by a 12 week / once per week regimen of a taxane. That may change as we may elect to do surgery first.
Chemo went well yesterday - everyone was so nice and I received Zofran and Emend in my IV so other than having to use the restroom every 30 minutes all was well. Toward the end I felt a little loopy like I had a few drinks and was slightly buzzed and a little dizzy. I napped in the afternoon, ate lunch and a small dinner, chugged 2 quarts of Gatorade/Propel (ew, so not used to drinking those!), plus water, took a post walk dinner and slept on and off throughout the night - mostly from needing to use the restoom.
Felt ok this morning, went for my Nuestra shot and took Tylenol an hour before as recommended by the nurse. Today's nurse said Aleve was recommended for bone pain so I went to the drugstore for that, sensitve toothpaste, Biotene mouthwash, Priolsec, and a few other things to have on hand just in case.
Tomorrow I got for an echo and CT scan since we weren't able to get those in prior to the chemo as the doc wanted to move fast.
Thanks for all the tips and advise. Am very much happy to be one step closer to beating this!
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aeryno, just wanted to mention that Claritin (yes, Claritin) is recommended if one has bone pain from the Neulasta shot. Can be taken prior to the shot and for the next day or two (in case you don't have relief from the Aleve or Tylenol). Good luck to you.
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I opened a fortune cookie today. And it said......"Everyone around you is rooting for you. Don't give up!"
I really needed that today.
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Slowloris-what a great fortune cookie! Even though you don't know me I am rooting for you!
aeryno-sounds like you have a great doc, getting things started so fast. How nice to have treatment so close!
Stupidboob-Sorry to hear about the heart problems. I had a constant elevated heart rate and very high blood pressure caused by the abraxane or avastin that I was on, doc thinks it was the avastin. I was also put on a beta blocker. I did a stress test on the treadmill and thought I was going to kill over right there! I was able to complete it thank goodness, didn't have to do the chemical one. I am still on the beta blocker. Are you having bad side effects from the beta blocker? Maybe they could try a different one? Thank you for the pm! I think I am doing a bit better.
Lovelyface-I have pain every day. I worry also. My bloodwork was all good and I will probably have yearly scans in August. My tumor markers are not as low as yours but pretty much have stayed steady after treatment, they were a bit out of range before treatment so doc thinks they are a good measure for me. My pain seems different than yours. When a wake in the morning it is like my whole body is in a cramp! My leags, arms, feet and hands. It is hard to explain, but feels like my muscles all shrank and are pulling super tight. As I start to move around and stretch I get a bit better. It seriously takes a few hours for me to get the stiffness/cramping worked out, and then I start to feel okay, almost normal by the end of the day/evening. Nobody really gets it, I think they think it is anxiety and don't understand why I can't do a whole lot. It is frustrating. I want to work and do more but I can't. I do think mine is estrogen related because everything got way worse after my hysterectomy. Nobody has suggested testing my hormones, but I guess it doesn't matter, can't do hormone replacement and my doc wants me on tamoxifen. I have terrible neuropathy also. My hands and feet are bad. I hate stairs because I have to watch every step, not sure where my feet are without looking! My doc ran a bunch of blood test to see if it was some kind of muscle disease and everything was good.
For those worried about the taxol study, I agree with those that said it has worked for many in the past and that is why they still use it. I had ac followed by taxol every 3 weeks in 2003 (not dose dense) and I did just fine. I had a new primary in opposite breast, docs are convinced that it was not a recurrence. My original tumor in 2003 was large, 3.5 cm and I had 2 positive nodes. My current doc thought my treatment was so successful the first time he gave me ac followed by abraxane/avastin. (Not taxol because I had a hard time with it the first time). I had a complete response, as I did neoadjuvent this time. And yes, I had AC TWICE!!! 4 rounds the first time and 6 the second!
OBYX, Kathy, LuvRVIng-Thinking of you and all others here on this thread! I wish I could send a note to EVERYONE, but my fingers are getting weird from typing too much!
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Okay, I updated my signature finally and realize how much CRAP I have been though this past decade. No wonder why I am tired and crabby and weepy! I know many have been through much more and I have no idea how you stay sane. On the discussion about how you are never given more than you can handle, I also say BS:) I am an anxiety ridden, emotionally unstable, crazy person! Funny thing is many people have told me how well I handle everything and how I seem so happy despite all of this. Maybe I should have been an actress because I certainly don't feel that way! Only you all know the truth!
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OMG ladies not only has the demented witch got a hole in her roof (a quick get-a-way on her broomstick) but she's even trying to gnaw her own leg off. Gave me my first real laugh of the day Kathy, as usual.
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First some specifics, then I have some questions for the relapse or high stage ladies.
Schatzi- Keep taking the GABA. I stopped taking it for 2 weeks once and my leg very promptly showed me who was in control! At least I learned that the GABA actually helps.
Dolce - I did e-mail Vanderbilt. Basically said no current clinical trials for TNBC, but to keep checking their web-site.
Thanks Ruth! I take oxycodone and it does nothing for the pain, but I'm willing to try anything. They were going to try an experimental Marcaine Pump (delivers a type of Novacaine to the nerve) but that's not an option during chemo. I have another steroid epidural next week and I'm praying this one works. My doc is pretty good about trying stuff and I have a Cancer Card again and I'm not afraid to use it!!!!
Lory - I hear you about the bumps. You can do mogul bump skiing on my breast now ;-)
Doglover - Glad surgery went well. I chose TAC. I did have a slight decrease in cardiac function, but that could just be old age!!! I'd do it again. Either choice is right.
Aeryno - Welcome! This is a great place of support and caring.
Bak -Question for you, are you on cholesterol drugs? I hear you about stairs. I do so many *faceplants* my friends don't even get concerned anymore. Many of us deserve Oscars for our acting skills. (((BIG HUG))). At least we can take off the masks and be real here!
Worry, Love, Flow - I try to go with the idea that people are trying to be helpful and bite another inch off my tongue. The one that cracks me up is my PCP. He doesn't get how aggressive TN is, and has that it's easy to beat attitude.
Annie - If I can make someone laugh, my day is complete. *smooch*
OK I need some advice from relapse or more than one round of chemo ladies.
My case went before the Tumor Board and I saw my onc yesterday.
She gave me the honesty I asked for. It was a difficult visit and forgive me, I'm not ready to talk about it yet.
The results were that I was right in my main question. The Tumor Board didn't feel T-C would be an appropriate choice. (I apologize to anyone who I scare with that info, remember that's just their opinion and we all know what a crap shoot this is). They are not even sure that chemo at this point is necessarily the right choice. (They explained why the Caldor Study didn't apply to my case)
If I want to do chemo they gave me two choices. CMF - Cytoxan (again, already had it)Methotrexate-5FU requiring 6 mo of treatment or Cisplatin which is 3 mo of treatment.
They said it's basically a crap shoot and they don't recommend one over the other.
Anyone have any information why one choice would be better over the other? Two opinions and now I'm more confused (other opinion wanted TC)
I'm also thinking of contacting John Hopkins for a third opinion but I have to wait for my final pathology report. This tumor came back HER2 +2 which is equivocal and has to have further testing.0 -
I am not a cancer patient. I am just a guy who loves his wife more than life itself. My wife had Stage 4 Hodgkins Lymphoma 16 years ago and was treated with Adriamycin and MOPP. Now as of April of this year she was diagnosed with TNBC, Stage 1c (1.9cm) but no node involvement. The onc says she can't have any more Adriamycin due to a lifetime limit she reached 16 years ago. So, they are treating with Cisplatin and Taxol weekly for 12 weeks, to be followed by radiation. Has anyone heard of this? Can anyone speak to the probability of success given this is NOT the standard treatment? This course of treatment was given 3 opinions AND put in front of a Tumor Board with no disagreement among the doctors. But I really don't see ANYONE else who says they're getting the same treatment! Not even one person!
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AL - welcome to this group. You are very welcome here and we hope you will encourage your wife to come join us.
I can't answer your question, but there are many who will come along to help.
I am currently fighting a relapse. In looking through the research studies, I found several testing the effectiveness of the Taxotere-Cisplatin combo. (Taxol and Taxotere are very similar drugs) One of the suggestions for my relapse is treatment with Cisplatin. (I've already by Taxol) So while this is not the "standard" treatment, I don't think it's also an that uncommon a choice.
My guess no one will be able to answer your question of success from any given treatment. I believe (correct me ladies) that the current stats are 77% will do fine after treatment and 23% will relapse at some point. No one knows why people fall into one group or another.
One of the frustrations we all struggle with on here is that while doctor's talk about "standards of care"......we patients are finding that little is really standard.
Please check back, because more experienced people will come along. Please don't hesitate to come join us. This thread is the best thing that happened to me after diagnosis!0 -
Thanks all for your support! I plan to jump back on here in a few days and catch up but right now I am posting from my phone (we just moved). My sister found out Monday that she lost the baby. I am very sad as they wanted more children and I know it can be hard now BUT I feel she has a much better chance to beat it now!
She will be participating in the I-SPY2 trial- without being about the effectively search well on my phone- any great stories to share? It sounds promising to me. She has her petscan tomorrow to make sure it hasn't spread.0
