Calling all TNs
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Ladies, I want to ask everyone whether any of you feel the way I do. Before I ever got diagnosed, I used to feel this weird sickness, which is as if there is a sort of looseness in my body, both my arms would sort of lose power, and I could feel a general sense of weakness in my pelvic area. After doing like 20 blood tests for everything from A - Z, including all vitamins, allergies, heavy metals, neurological testings, my neurologist confirmed that there were no negative findings. The one thing that they did find was that I had a very very mild sleep apnea (my numbers were really low though). I used the sleep apnea machine for several months after that, but did not feel much difference in how I felt. Then I got diagnosed with BC and during chemo and several months after that, I did not get this feeling. At that time, before BC, I had determined with the help of my gastro doctor that it seemed like I had very low estrogen levels which was the only thing out of range on my blood tests.
Well, now after all my treatments finished (by the way, I felt great during and after my treatment), they gave me Aridimex (anti-hormone), and this medicine has made my estrogen levels even lower than ever. I have begun to get those weakness feelings again. Both my arms seems to be getting paralyzed all day long. When I eat high fat food such as milk shake, sugar, etc., then I feel okay for a few hours. If I eat low fat, I feel even sicker. I feel that my body is not making estrogen, or making any hormones, which is probably how I got BC in the first place.
My theory is that women with low hormones get TN, and women with too much ER, get other positive types BC. I honestly believe this is what happens. For some reason TN's are not able to make estrogen as they get near menupause or get past it.
Anyone feels like me? If you do, how do you describe this feeling to doctors? I used to tell them that I feel paralyzed, that's when they check me neurologically. Oh God, what is happening to our environment, our bodies. I think that since our estrogen is so low, the bad estrogen which mimicks estrogen in the environment attacks our bodies and causes BC. Anyone have any similar theories.
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Lovelyface - I didn't feel like you described, but two years before I found the BC I had my doctors put me through the ringer to try and figure out why I was exhausted, dizzy, and just feeling bad. I also had neuropathy in my big toes, and it turns out carpal tunnel in my left arm. I was worked up first for MS - brain MRI, blood work, neurologist - which showed nothing, and then did a thyroid work up. In the end, we couldn't find anything, although I think it might have been mild chronic fatigue. Which is interestingly linked to the Epstein Barr virus, which is further linked to mono - and I had that in college. So who knows? Maybe cancer IS related to a virus, and my resistance finally wore out. I try not to second guess anything at this point. It is what it is. I know myself I have always been very "hormonal" - very obvious PMS symptoms, got pregnant very easily all three times, lots of morning sickness, etc., so I don't think lack of hormones was my problem.0
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Laurajane, thinking and thinking of you xxxxxxxxxxxxx
Heidi, thanks so much for helping us all to smile
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Hi Suze, it is interesting to note how something does lead to BC. I also did have Epstein Barr Virus some years back. The only reason I am trying to talk about this at this point is because by August 7th, I have to make up my mind whether I am going to try to take the anti-hormone and zometa, for the 5% positive progesterone which I have. I left aridimex on May 25, but doctor wants me to try another anti-hormone. Anti-hormone taken with zometa has shown to increase survival by 35% according to my Oncologist and my doctor said he would twist my arm if he had to - as he wants me to take it for that extra life insurance. He said I am 90% cured, but for that 10%, just in case I am not TN and on the positive side, he wants me to be covered. However, my health is basically destroyed due to the anti-hormone which I stopped on May 25. I feel that it drastically reduced my hormones in my body. I can hardly function these days, just want to lie down. Whereas after BC treatment, I was just fine, running like a little kid. But doctors don't have time to listen to us, or even try to figure out that maybe TN's should not be given anti-hormone. I am so confused whether I should attempt another one or not. Damn if I do and damn if I don't. I am not sure when I will get back to normal, or whether I will ever get back to normal. The damage this anti-hormone has done to me, I can't tell you. It has destroyed my health. I have neuropathy, pain everywhere and am very very tired. I took Zometa infusion 6 months back, so the next one is due on August 7th. I have to decide about the anti-hormone by next week. A very very difficult decision.
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Lovelyface,
I'm in a local BC support group. There are a few women in the group who have switched drugs with good results. One was on either Tamoxifen or Arimedex and it made her eat and cry non stop. When she switched, she had very little side effects. I just found out that I have 5-10% estrogen receptor positive BC - so I may have to make the same decision soon. I've been so worried about my chances due to having residual tumor/lymph nodes after neoadjuvant chemo that I am definitely going to try the AI or tamoxifen if offered.
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Lovelyface,
I didn't have the same symptoms you described either, but one year prior to diagnosis had gone to the doctor to get bloodwork because I was so tired. At the time I was working 60-70 hour weeks, helping with animal rescue, and trying to exercise here and there. When the bloodwork came back normal I thought it was just my busy schedule making me tired. I had noticed a big difference when I would go on bike rides. I used to ride 20 miles without a hitch but when I would ride during this time period, it seemed like such an effort that I began to dread going. Again - I thought I was just out of shape. I also had lots of pain in my upper back. I knew something was wrong but could not pinpoint it. I was also dizzy at times, too. I had an episode where I had been working out in the heat and also taking lots of pseudoepinephrine for allergies - I almost fainted and had to pull over on the side of the road. That could have been the medication alone but it was really scary. I just mention it in case anyone else had something like that happen prior to diagnosis. I'm like Suze, I've had the "hormonal" symptoms of PMS, morning sickness, etc.my entire life.
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I too had been complaining of feeling very tired and no energy! Dr. said my Vit D levels were low and then just 6 weeks later found out I had BC trip neg! So I feel like that was why I was tired.
Also just months before I had carpel tunnell surgery, now wondering if it really was?
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I have very low Vitamin D levels, which I only discovered from you lovely ladies here talking about it and bugging my doctor to test for it. I'm taking 2000 mg D3 a day, and if I miss it, my levels go right back down into the teens again very quickly. I always had very heavy periods which lasted a full week. I'm glad I'm in chemopause, but taking the tamoxifen has caused me to pile on 20 pounds I can't seem to shake and my cholesterol and triglycerides are both up. My onc says he'd rather treat that than let me stop taking the Tamoxifen for my 8% ER+ tumor. I'm wondering if it's worth it, but have kept taking it and added Zocor and Niaspan to my daily meds.
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Riley702, that is a funny story about your cousin on the Camino.
From the time of my diagnosis, I made myself keep walking...however much I could do. I think it helped me through the SE's. I had planned to walk the Camino de Santiago pilgrimage last year, then I was diagnosed with the BC, so being able to do it a year later, with my daughter, was hugely meaningful to me.
LauraJane and Jenn, you are in my heart.
Susan
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Thanks, mity! I was going to ask you how you prepared for it, but you've already answered. I love to walk, too.
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The week before I was diagnosed I was hiking in Shenandoah National Park and remember wondering WHEN is this trail going to end? I was SO tired. I've often thought about that and still wonder if there was a connection. I kept telling myself I was just getting older.... but much of my fatigue seemed to happen overnight... not unlike TNBC itself.
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Yes, before I was diagnosed I had been unusually tired for months. My husband kept giving me odd looks, and saying "I've never heard you talk so much about being tired." I too thought I was just getting old.
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I wasn't tired or sick prior to diagnosis, however, I strongly believe that stress and depression is partly to blame for my bc. We moved to florida to be closer to my family about 6 years ago, my mom died unexpectantly a year later. I was left with taking care of my very elderly grandparents, my grandmom had alzheimers, it was very hard on me, I don't like living in florida, no other family or friends to help or for support, then having the handle all matters for my grandparents was too much and I became very depressed. I'm fine now except for BC but I really believe deep down I let the stress and depression get to me and somehow that helped start this. Maybe I'm crazy for thinking that. I don't know.
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LJ...will be thinking about you all day tomorrow...Mity said it the best..you (and jenn) are in our hearts....
I felt like crap about 6 months b-4 my diagnosis..my SIL was diagnosed earlier that year with BC, my son was in a car accident right b-4 his senior year he was ok..but it was his fault but the other driver turned out to be a freak that creeped on us..he drove by our house, made several threatening phone calls..we had to call the police on him 3 times..I was totally stressed out. I kept losing weight..my hair was just ugly...I thought it was menopause coming on because my periods were weird..
A friend of mine who is a nurse told me just a little while ago that she thought I looked sick during that time..I wish she would have said something but I probably wouldn't have listened to her anyway..I had a clean mammo didn't I??? It just never, ever entered my mind that I could have cancer.
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I was feeling great when I got BC. I had just spent six months with DH in New Zealand and Australia on his sabbatical leave. We had been back a month or so when I "found" a lump seemingly under my arm, but really on my boob and all this stuff began. I had had a routine physical before we left with pap and clinical breast exam and everything was fine - felt fine, no sign of anything wrong.
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I agree with you,Mccrim. Stress and depression are the devil at work.
2 years before Dx had many stressful things happen to me. In a period of 4 months I took a job that added an hour each way of commute time, discovered a near ending event in my marriage, then my husband got an unexpected early retirement package and my son enlisted in the military. Um....less than 2 years later I was DX. I was still healing a marriage and dealing with empty nest and worry for my only child. I hated my new job, too. Even tho I was taking very good care of my physical body.....eating good, going to the gym and keeping my weight where is should be. BUT emotionally, I was a train wreck. I still think that this kind of stress can trigger a chemical reaction in your body (like lowering your immune system) that launches the sleeping cancer giant to awaken. In fact, without knowing any of my personal history, my first visit with my onc was very interesting. While we were talking about my treatment plan, I asked about what i could do to stay as strong as possible and have the best outcome as possible. And the first thing she said was this, " Whatever stress you have in your life, take care of it. If you can't fix it-DUMP IT" So I quit my job and my DH and I continued the healing process and stayed in couples therapy. (we are a work in progress to this day) I Prayed more that God would protect my son because I knew there was nothing I could physically do to keep him safe.
Now I try to keep things low key. When I wake up (I know, sounds corny) I whisper out loud how grateful I am to be alive today and I find something of beuaty or joy. Hell, I even have thoughts of gratitude while I am in the middle of exercise class when I am sweating like a pig and panting like a dog. Just glad to be alive and able to have the strength to do it
But there are days when I will have my own little pitty party. But I have a good network of listeners....I try not to let it go on too long. Seems the further I get from DX date the easier it is to snap out of it. Of course scanxiety is a rough one and I just have to accept that it is tough during those times.
Navy
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I was feeling on top of the world when I was diagnosed. My creative spirit was back, I'd had a painting published in a book, my marriage was going well, kids healthy and happy... Truth be told, things going so well made me nervous - I knew good times always come to an end. And it did, in the worst way.
But before the good times there were a lot of bad stressfull times - years of infertility treatments, then injuries to myself from childbirth, marriage troubles. When my first son was 2 I was hospitalized with a mystery illness - 105 degree fevers, whacked out liver enzymes. They finally determined it was CMV, a relative of mono. My immune system was trashed for several years after that.
So... perhaps all of this led up to the cnacer, coming up and smashing me over the head just when I thought I might be in for some happiness.
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Laurajane - thinking of you today. Let us know how you are doing. Hugs!
Stress here also for several years before diagnosis. I had just had my daughter, we moved 2 times in 3 months after buying a house (VERY stressful), and my husband started traveling more as well. I was juggling 3 kids and trying to work weekends, driving myself crazy over not having a career. It was a rough time. Add in yo-yo Atkins dieting, and something just broke down. I was just starting to get myself back on track when I found the cancer.
I now make a lot of effort to meditate every day, and actively work at not letting little things bug me like they used to. Not easy!0 -
LauraJane-praying for strength for you today.
I, too, was under great stress for many years before my DX. My parents were in bad health for years, and being an only adopted child, I was the only one to take care of them. My father pushed himself into the grave from taking care of my mother, on top of his COPD from working in fiberglass most of his life. Between the time I lossed my dad and my mom, DH & I bought some land, and put a mod home on a walkout basement, was supposed to be our "fastest" way to get into a new home(verses building-which is BTW what I wanted to do)-there were so many things wrong with it, we spent 2 yrs in court, not living in the house, paying utilities, phone and taxes on 2 homes. Lawyer lost in court, so we had a cobbled up house, $40,000 worth of expenses that we will never recover, and didn't get to move in till 2 yrs after we build it! Then, my mother became so distraught over being alone, but she wouldn't leave her home, wanted to die there. She passed in fall of 1999. I was at the point of a nervous breakdown. It took me a long time to get over the everyday stress and anxiety she caused, unnecessarily. I learned a lot about what I WONT do to my kids. Anyway, just starting to settle into my "new life"(never meaning to be disrespectful), just mean without stress, turned 40 in sept 2001, my DH joked "it's all downhill from here!" Around Christmas I felt what I thought might a lump and by Valentine's Day it was "you have cancer", what a VDay present that was! I really believe stress can cause cancer. I also agree with the virus theory, and a couple other ones, too! I think that we are all vulnerable to cancer, but when the right set of circumstances create the right atmosphere in your body, cancer happens. Someday they will get it figured out, I just pray with all the advancements, Dear Lord, let it be soon!
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Teka, I didn't mean to imply that I felt responsible for my cancer. I only meant that I believe and have always believed stress and depression play a part in our health. I'm so sorry we all had to go thru these stressfull times then we get hit with this crap. I am trying to do what I can to not allow stress or depression to get to me anymore. I need to work on meditating, it's not something I've ever done so I need to find the time to learn and focus on it. I was going to the gym faithfully prior to chemo but now in the middle of it I've got my eliptical at home and a pool, I need to lose a lot of weight as well but taking things slowly with Chemo.
Hoping everyone has a great week.
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Thank-you- I believe all of your prayers and well wishes and positive thoughts have worked. I have fabulous news to share with all of you. I couldn't wait until tomorrow Ive been driving myself crazy so I called my onc today to get the results. She said they had the best news they could possibly give me. The cancer is semi local.Yahoo!!!! Its just in my lymphnodes in the original area but has spread up into nodes in my neck Yahoo!! The other great news is that my markers are up Yahoo!!! Which means that they will be able to keep an eye on them to determine whether the treatments are working and if not change me to another one etc. I am so happy to hear this. No sign of cancer in my liver or lungs or anywhere else. I am so happy. This is truly a blessing.
Speaking of tiredness. I told my onc how crazy tired I have been two months ago. I have a gut feeling that my cancer had come back then. I asked her today why I have been feeling so bad and she said she didn't know. That it probably is from anxiety and stress. Right before I originally was diagnosed a year ago last may, I had complained to my gyno that I had been feeling so tired with lack of energy also. Don't get me wrong I felt good just tired like I have been feeling lately.
It is so nice to be back on here. I have really missed all of you. Today my family and I are all going to have dinner together to celebrate my sisters birthday and today I am taking my grandson to the childrens science museum. With a nice nap in between.
Jenn- I am thinking of you.
Susan 200 miles? Wow! That is fabulous. To all of you that walk I am going to try and start walking again you all give me incentive. Thank-you.
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Laurajane, Sooooooo happy to hear your news!
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Lovelyface I felt like PURE CRAP before my DX. Since TX I feel like I am 18. Weird right?? Had that joint thing really BAD for like two months. I couldn't get up stairs some days. Once that wore off I was okay. I went to an Endorocologist(?), OBGYN, GP who suggested a mamo and bomb thing went fast from there.
Editing to say: my life was a HOT MESS prior to DX. I feel much better today because I let it go. I truly let it go. I no longer stress over things I once did. I truly believe this is why I feel better.
Will cherish EVERYDAY!
Diagnosis: 8/30/2010, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER-/PR-, HER2-0 -
LJ - I am so happy for you, I just have a huge smile in my face!! I also had supraclavicular nodes show up, right after surgery, and radiation knocked them down really well. Has that area been radiated yet? If not, I would talk to your doctor about maybe doing it after chemo to do some mop up. What chemo are they looking at? I'm doing Xeloda with Avastin (my insurance company approved it because I am technically considered recurrent) and it has been very manageable SE-wise. Keep us posted!
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LJ - While a recurrence sucks, that is the best news!! Your lymph nodes did the job they were supposed to do, filtering that cancer. Very happy and relieved for you. Keep us posted on your treatment.
On the cancer symptoms issue, I too felt fine before diagnosis. My sister had been through BC a year before and my ailing dad (age 82) died 6 months earlier, but I really don't attach these life's stressors to my disease. I'm pretty sure most women around age 50 have things going on in their lives that can be stressful (jobs, kids, marriages, aging parents etc.) and they never get BC.
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Suze- I'll find out tomorrow what the treatment plan is. yes I have already done rads in that area I finshed them last May. It's nice to hear your chemo is manageable. I'll keep you all updated when I hear more tomorrow.
hey thanks for the congrats! Hope everyone has a great day.
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LJ- great news!
Add me to the list of people who had *EXTREME* personal stress factors happening in their lives prior to DX. Truly life changing events that, frankly, I will never recover from... you just learn to deal with them. Good practice for living with BC, come to think of it.
Did anyone hear Ryan O'Neil speaking on the subject of Farrah's cancer on Piers Morgan? He truly believes that if it hadn't been for the extremely negative and upsetting influence of his family on her she would still be alive, never having gotten cancer. Piers asked him if he truly believed that. Answer? Yes. That's a heavy load to bear.
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Hello Lovelyface
I have been reading your posts. I was diagnosed with TNBC in 2005 and was told I was 0% oestrogen and 5% progesterone as well as HER2 negative. I was told that 5% was so small as to be negligible and that no anti-hormone treatment would be of any use. I was told that if you are diagnosed as TN then you should NOT be on any anti-hormone medication! After more than six years I am still fine and all my check ups show that I am apparently still in the clear. Please be careful what you are doing.
I hope this information will help. Good luck.
Sylvia
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Woo Hoo LJ! Great news!
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lovelyface- I guess it comes down to one of two choices for you. Which is more important, the health of your body or the health of your mind?
You have enviable stats by many's standards: Stage 2 and zero nodes. Many are literally dying to have your chance for survival.
Is relieving what appears to be a constant state of stress for you (by doing more chemo) worth the potential permanent, or continued, effects to your body from prolonged chemo?
Many of us have stood on the threshold of that abyss when we have finished our treatment. Many of us, though frightened, have also realized a certain sense of relief that, unlike the ER/PR + gals, we don't have to endure the 5+ years of continued treatments that often result in additional pain and suffering both mentally and physically. In a nutshell, we are*forced* to move on because there is nothing more to be done beyond routine check-ups, etc.
Only you can make that decision. Peace.
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