Calling all TNs
Comments
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AlHusband: Congrats to your wife - relinquish the card!
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Thank you all for the good wishes. 2 days out from 1st tx and I feel normal. No loss of taste. no nausea, just slight tiredness. i don't know if a cumulative effect will occur with each subsequent dose, but so far, so good.
AlHusband, So glad to hear that your wife may be done with all of her surgeries. I think a wonderful relaxing vacation is what you need this summer. (I'm partial to the beach).
I know what many of you mean by trying to find your "new normal". With ending my work career, dealing with constant dr appts, missing my MIL who passed in march, and worrying about my mom who had a heart attack in Dec, I'm not sure what normal is anymore. I'm sure I'll settle into a routine, and I think that is what we ALL probably need... a routine, a plan. Hopefully everyday stuff will keep our minds occupied and the new normal will appear. I wish this for everyone, when days can go by and bc is not thought of at all.
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slowloris: I will only look at the good part and that is there is no distant mets. Your tumor looks like a lazy one. I see that you got diagnosed thrice at stage 3. So your tumor is maintaining a consistent status.
My onco mentioned about a woman who has been on chemo since the past 6 years. So then as we are talking about a "new normal" here, a life without hair and being sick 5 to 10 days a month, because of chemo is her new normal.
All I realize, post this diagnosis of mine, is that, we humans are very flexible. We can adjust to almost anything.
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Slowloris, I am sorry that you are having to face this beast way too many times in such a short period of time. Cancer sucks! Hope you dont have to many side effects from this current round of chemo.
Michele
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I just want to thank everyone who started this discussion board. I see no one holds anything back both positive and negative. Sometimes I feel I just want to vent but I don't want to discourage others who are new to cancer and I want them to keep a positive attitude to get them through it and I don't want to bring them down. I don't feel so alone anymore and I just love the fact that you all say "the new normal" - I've been saying that since last year and thought I was the only one who understood what it actually meant. Thank you!
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Has anyone been on Taxotere? I was allergic to it but had to take it anyways so they desensitized me to it and I was told this is the only type of chemo treatment for my TNBC and if my cancer comes back there is nothing they can do. I had another type of chemo 8 years ago. Is having two types of chemo all they can give you?
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LP Boston, no worries new warriors or seasoned warriors we are all in this mess together. Having done the dance before, makes it even pisser and harder the second time around. I get that being a 2nd timer at this game!
I have been on Taxol for my first bc in 2005 and did OKAY on it.
Here is something I found on chemotheraphy drugs used for TNBC:
"Xeloda (capecitabine) and platinum drugs, among many others, are often
used for relapsed disease. Platinum-based chemotherapy drugs, such as
cisplatin and carboplatin, are also proving highly effective for a
subset of patients with TNBC whose tumors carry a mutation in the DNA
repair gene BRCA1. More than 75 percent of these tumors are TNBC. “These
tumors have a defect in their ability to repair damaged DNA,” explains
Kent Osborne, director of the Smith Breast Center at Baylor College of
Medicine in Houston. As such, he goes on to say, they respond better to
DNA-damaging agents, such as platinum drugs, than to other TNBC tumors".It also talked about the taxanes being used which is Taxol and Taxotere.
I finally have my oncologist appt on Jan 29/14, next Wednesday...so want to get this show on the road...not really but dont want to give this beast a chance to do anything!
Michele
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LPBoston,if it comes back,I would seriously think about switching Drs. There are different chemos out there,they can use!
Also,don't worry about venting. This is a safe place to do so! Everybody has their days when we just need to let it out! (((Hugs)))
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LPBoston - There is a manual on the internet called NCCN Guidelines for Treatment of Cancer by Sites or it may be called the NCCN Guidelines for Physicians. Here is the link. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#breast You do have to scroll down to the correct section (Physician's) and then select the type of cancer (Breast). If you download this (it is about 250+ pages of schematics and medical terminology) you can track the specific type of bc you have, with various information about your path report and it will show you in that the preferred chemo treatment, other chemo treatment, etc. The chemo groups were divided into what I think were 1st tier recommendations and then supporting tier recommendations. I remember it listing a lot of chemo variations and multiple combinations of various types of chemo medications.
Maybe what your Onc meant was that if it returned he wouldn't be able to aim for a cure but for disease management instead? I agree with Belle - it's unusual to hear an Onc say that there is nothing they can do - but then again, he may not have elaborated on what he meant, and so there could be a lot of meaning behind that small mention of his. Maybe he was meaning if it came back to distant organs versus a local recurrence? I think I would drive right down there and ask him for clarification. I wouldn't even call - I would do a 'pop-in' and tell the Nurse that you wanted to see the Onc for a quick second to get clarification on something. You might not feel comfortable doing that - but that's how I've handled a few things with my Onc - back when he and I were still getting to know each other.
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Regarding the new normal - it is a process to discover life again after bc treatment and to emerge again into a typical daily routine or lifestyle, one that you had before bc. With the exception of the new normal (diet, nutrition and exercise) this is how I was able to make the leap forward into carrying on with life.
- Well, for starters, worrying about recurrence risk was pretty exhausting for me - it consumed me. I was able to significantly tone that down and transition by keeping very positive information close at hand, saved on my web browser to refer to any time I needed some positive medical information.
- I also started acting like a survivor. For me, that involved remembering how I lived before I had my bc diagnosis at the end of 2011. It would have been a terrible year if the entire year I worried about getting bc in Dec (before I knew I had it). I decided to live again like that rather than live with the idea the something 'might' happen.
- I started seeing my opportunities. Example: instead of seeing a workout like a chore, I started to view it as an opportunity.
- Then to execute this new attitude, I had to do what I call "fake it until you make it." That for me meant every day just going about living as if nothing is going to happen. Things like, lining up goals again, saving into the 401k, shopping for a new credit card, replacing old car, etc ... whatever it was, it meant just going back to standard operating procedures in life. It meant creating and sticking to a schedule again, just like before. Sure, there are few additions to the daily routine now - but faking the routine until it became a habit was huge. Before long, I woke up and bc was no longer the first thing on my mind. In fact, I could go a few days without thinking about it and was no longer doing actions solely because of the worry. Making my kale smoothie went from making the kale smoothie because I need to have vegetables for optimum health, became just making a kale smoothie. Little by little the presence of bc as part of the daily routine subsided and the reality of living a happy and full life started to return.
- I also continually referred back to what my Oncologist has shared with me and learned to put this in his hands. He is responsible for making sure I succeed and I'm entrusting that he is monitoring me closely. I shifted some of the responsibility of my survivorship back to him. He is the expert and I needed to support him more that he is the expert.
- I also got on Metformin. Once I was able to get on that (thanks to several women here at bc.org) I felt like I had gained some control (if you are a Type A personality you might understand me when I say that). It's kind of like the placebo effect - beneficial effects that may not be directly correlated to the drug but tied to the belief that the drug is helping. For my psyche this was a big win.
- I added Vitamin B12 supplements - or a B-Complex - it can help to ward off depression because B vitamins play a role in chemicals that affect our mood
It's also noteworthy to mention here, that this was not a process without much attempt -- there were several times during the transition where I was anything but the example above. However on those off days, I would just let myself give in to an off day, and tell myself "I will try again tomorrow."
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inspired, did you have elevated glucose or did your Dr. agree to put you on metformin? I just had my yearly physical and found out I'm hypothyroid so have started meds for that. Unfortunately my LDL is elevated (probably from thyroid) but my glucose is also at the upper limit of normal. I've been interested in metformin, but my mo said she can't put me on it because trials are closed. I'm not sure at this point how much medicated I want to be on, but am curious.
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Hi Shari - if you can please e-mail me to my personal e-mail address below and I'll share with you the literature that I used to take to my doctor. I was able to get on it through my PCP and my Onc knows of it as well. My blood sugar glucose was in the normal range, but at the higher end of normal too, so I used that at a reference point in my discussion with my PCP. I was concerned that the PCP would not let me go on it, since everything was normal, including my cholesterol which hit all the optimal ranges - but after reading the info I gave him and listening to what I had to say he said "I have no problem putting you on Metformin". The Metformin works in a couple of ways - it reduces circulating insulin cells and also reduces androgens - something that researchers are finding is also beneficial to TNBC. If you can, please e-mail to me at myscreename@cox.net And swap out myscreenname for the one I use here on the forum. I have to say it this way to not get spam from the spam bots.
I have also had several PMs from women here who said that if their Onc did not approve it, but they got it from their Primary Doctor, when they returned to their Onc, that their Oncs were very happy for them. I have heard that message over and over - and when I reported to my Onc that I was on it, he also did not have a problem with me being on it at all. I have returned to my PCP in December and he moved me up to the trial dose, he started me at a smaller dose in the beginning. I can tell you since going on it, I don't even know I'm on it. I have had 0 issues or side effects with it.0 -
slv After reading about the Metformin trials, I asked my PCP about it. He was very happy to prescribe it for me even though my glucose has always been normal. Says it is an old drug with no problems. Other doctors I've seen in the last few years are surprised, but no one objected.
inspired I'm trying to get my act together and create to healthy routine as you have. It's too easy for me sit in my recliner and read all day. Being retired and living in the woods, the motivation is often hard to create. Thanks for posting.
I saw a new MO today. It was the first time I've left an oncology appointment with a smile. My previous oncologists were all crabby and without a personality.
Sunny, warm, and DRY here in California. Weird weather every where. Jan
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I couldn't qualify for the Metformin trial as I was already diabetic (controlled by diet alone) and my Onc wouldn't give me the prescription for it. So I asked my PCP and she said "no problem". She started me slowly but eventually I got up to the 850 twice a day. For anyone starting it, just be sure you take it with food, otherwise it can cause some GI issues. My last visit with my Onc he asked if any of my meds had changed and I told him about the Metformin and he was ok with it. There is so little available to tnbc patients other than chemo, surgery and rads, I am going to take advantage of everything I can.
Doreen
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Hi Doreen, thanks for sharing with us how your Onc reacted to it! What you have said is the very thing I have heard from many women - Oncs have been very accepting of it, even if they originally had denied it or weren't the prescribing Physician.
There is one solution to the GI issue - I did a ton of research before deciding whether to take brand or generic, and I went on brand name Glucophage. With brand name I have had no issues, with or without food. Additionally, several women who were having issues on generic brands, I told them about brand, and of those that switched to brand they also have not had any further issues. However, I must issue a warning that brand can be expensive. If you do go on generic (anyone) there are like 14 different manufacturers - try to select a US manufacturer if possible.
Jan, love hearing about your new Oncologist's office. That make so much difference I think. I like my Onc and the office so much, that on appointment day I am not even thinking of the test or anything, not even the week leading up to it ..... not until the man comes at me with a needle. Then I float back into reality and do worry a little until the next day. Not really a true worry, more like a calm 'hoping it's all okay' type feeling. If I didn't have to make a living and if I wasn't the Cat Nanny and Director of Household Affairs over here, I too would nap all day in a lounger without shame! I'm sure the care you are taking of yourself is well within reason!
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hi, I used to be more active in posting here but have been living my new normal so I've not taken the time to post regularly. I have, however, read every one of the posts on this thread each day. I am always inspired by everyone's strength, especially in waiting for test results or dealing with a recurrence.
I am on metformin at the trial dose. My onc wouldn't prescribe it but my gynecologist had no problem as long as I agreed to blood work every three months to monitor liver function. After chemo, this seemed like an incredibly small price to pay for something that might help.
Another thing, while I was in chemo (I was one of the people who could never get their nausea resolved so I was riding my couch for most of the two months of AC. I told my husband then that if I ever had a recurrence I wouldn't go through treatment again.
Now, with the support and encouragement I have gotten from breastcancer.org posters, I have found a new normal that is better than my pre-BC life. I've developed positive qualities I never had before. Now I feel that if I have a recurrence I will do treatment again. Thanks to all of you for that and more.
I had a small epiphany this morning. Since chemo my resistance to germs has been lower than before and my colds seem to go right into sinus infections. I've had a cold since Saturday and yesterday I totally went off my healthy eating plan. This morning I realized that even this cold reminds me of my vulnerability to a recurrence and I was unconsciously eating out of anxiety over that. I hope that with that insight I will eat healthy today. Also, my exercise has become a habit I miss when I get sick, so there's real progress there.
I think that anything we can do to actively fight this disease leads to more optimism. It's a balance between knowing the research stats about recurrence and that part of this happening to me again is a crapshoot and knowing that if BC does recur I've done all I could to prevent it. Diet and exercise and metformin are my primary active tools, with some other supplements not far behind (e.g., vitamin D3).
Inspired, I do need to get back to my kale smoothies--thanks for reminding me of that.
Anyway, mostly i wanted to say I care about all of you and am grateful for all of your posts! I need to work harder at responding to specific people who are struggling at the moment (venting is healthy I think) as well as to thank people individually for how their attitudes and info enrich my life.
Supposed to have 3 to 6 inches of snow here today. I live in Northern VA where we don't get a lot of snow usually so it is a bigger deal to us than to those who experience snow frequently. We really are neophytes in coping with snow--no wonder people in the Midwest and further north chuckle about us.
Hugs,
Peggy
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Peggy Thanks for your post. I could have, and probably should have, written much of what you just wrote. I usually read this thread yet seldom respond. I'm still floating around with a smile after yesterday's happy MO visit. Now I need to take that energy and start living my life for real, not with cancer hanging all around me. Love you, Jan
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JAN69,
Enjoy your cloud of happiness! Enjoy your life! As Haley says in Modern Family, let's get this party going!
Love and hugs,
Peggy
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Maybe I am nuts but I intend to have a new normal with BC. This is how we are going to survive all these treatments and visits and etc's. They will be part of our lives for a a year. They are our normal right now. I will have another new normal after all that is done. I intend to have a lot of new normals.
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tekwriter - Love your attitude! You rock.
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*pops up like a bad penny..........waves and dances dementedly*
I promised myself I'd stop in to wish you all happy holidays, but I was still layed too low from chemo. (If any doctor ever tells you that the CMF chemo is "much kinder and easier than other forms of chemo".....make sure that you promptly kick them in the ass!)
I have only had time to read back through about 5 pages of posts, so I'm not caught up on everyone's news. (Slowloris, I'm thinking of you very much as I post this, after reading what's going on with you. *Hug* This kind of like your I've got good news/bad news post)
I just finished chemo 3 weeks ago and have had a PET. Areas in my breast, lymph nodes and possibly my breast skin have lit up. (The good news.......it didn't show up in my body!) The radiology report says "it's supicious for metabolic activity". I spoke with my breast surgeon in Boston over the phone. She thinks it's inflammation, (Yes Slowloris......I'm paying attention to your post!) and the only thing she offered is another PET in 3 months. (To not confuse anyone, I am still a patient at a Boston facility, but I chose to have this chemo at a local facility with a local oncologist, so I am working between 2 systems right now).
After I hung up the phone after the brief conversation......all kind of questions came into my mind. (I was still to sick from chemo to be my normal, fiesty self). I called back and insisted on an appointment with my surgeon, because I have unanswered questions. (Hey.....how about a damn biopsy instead of just waiting????) Believe it or not, I had to justify to her nurse why I wanted to talk to the BS in person and had to be quite insistent to get an appointment. If it is in fact cancer, I may consider radical MS and the total lymph node removal. (The BS is telling me this can't be done...for various reasons). I brought all this information back to my local oncologist for her opinion. Her advise was short and sweet......."they don't treat this seriously and biopsy it..........find a new doctor!"
This brings me to the kind of "good news" part of the post. (As I type this I'm thinking of OBXK - Karen . I see no posts from her since November and fear what this means). Karen posted last spring/summer about an experimental study for Androgen receptor positive BC. (Bells went off in my head because I was on a testosterone based hormone replacement drug for many years.) I asked my local oncologist about trying to get me tested for the receptor (wasn't sure if it was still to experimental to be able to get testing done). She said she'd get in contact with Boston and see if she could get it done. (This is where it gets humorous........and why this web site is so important in teaching us to be our own advocates). She repeatededly sent requests to my Boston facility to get me "androgen receptor tested" Her first request got me ER receptor tested. Her second request got me PR tested. Her third (very insistent) request got me HER2 tested. She finally told me "ohhhh the hell with this" and found an outside lab to do it.
I got the results this week. (If your results are below 10% you are AR negative.....over 10% AR positive.
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Wait for it.........
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Wait for it.........
My tumor is 99% positive!!!!!!!!!
Now this may not save my life, because the treatment options are still experimental, and they think AR+ tumors may be more chemo-resistant..........but if I can get them to keep this beast at bay for as long as possible........maybe I'll have a chance at an effective targeted therapy. (Karen....wherever you are, I'm sending you my love).
My other news is that Mom is still alive and kicking and will be celebrating her 88th next week. She is still in the NH. I was just getting ready to start hiring staff and work on getting her home when I got the PET results which put a screeching halt to those plans. *crosses fingers that it's just "inflammation" so I can get her back in her home at some point*
So that's my news ladies. Please pray for my BS thursday *big grin*
I will be running back to my own home the next couple weeks (where I have a computer) so please leave a post if you have news about yourself for me.
I love and miss you all.
*shimmies and belly dances back out of thread*
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Thank you for taking the time to send me this information. I will definitely take a look and try to navigate through it. I think what my oncologist meant was if it had spread into my organs there is nothing they can do because it is a fast and very aggressive type cancer. They say I should not worry about it because there was no lymphe node involvement and I had the double mastectomy. What makes me nervous is I had two biopies on the right side in 2003 before I was diagnosed with bc on my left side in 2005. I am wondering if this TNBC on right was lurking back then but they just didn't know it was there because it was so deep into my breast and couldn't get a good reading on it. From January to March 2013 I was put through a mammogram, ultrasound, breast mri and then more biopsies and they still couldn't tell what it was. I had the decision of a lumpectomy or mastectomy - I chose the double mastectomy with tran flap reconstruction and even then they wouldn't tell me if I had cancer until after they read the path reports which obviously came back with devastating news. I wish I had both off back in 2005. If I had known more I certainly would have. So now just struggling with how to move forward and try to enjoy everyday without being so depressed. I put on a good face while at work and at home but I am dying inside. It's exhausting. Anyways thanks for listening.
I hope we can all stay strong and be healthy again.
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Kathy - Popping up? Wow, it sounds like you would surely be down, what with all you've been through. Your story is so filled with not-so-good-news that I can hardly imagine how you can still walk and talk. Things just have to get better.
I am so sorry to have to tell you that our dear Karen passed just after Christmas. She was so strong and supportive and caring and helpful and all-round good person. I miss her!
Sure hope you can get back home and get those oncologists to figure it all out.
My good news is that I finally have an oncologist with some compassion and life!. Yesterday's visit left me smiling and feeling 100 pounds of relief. Still flitting around happy today. Not able to shimmy or belly dance, but close. Jan
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It's nice to know we are allowed to have a bad day!!!
Thanks for Sharing!
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LPBoston, I had taxotere with my first tx. I started with 4 DD AC treatments, then was to have 4 DD taxol. after 1 taxol i developed extreme nerve pain, so much so that I physically could not walk for 3 days. The MO switched my last 3 doses to taxotere, which I tolerated somewhat better, but still got neuropathy pretty bad.
As far as having a recurrence, my MO said there are many drugs that can be given.It is my understanding that some of the tnbc really like to keep popping up. Notice, I said SOME. There is no reason to think that yours will be that kind. But if it is, many different treatments are out there,with some people remaining on a certain tx for years with good results.
Keep hopeful. Every day new treatments are becoming available, and the tnbc vaccine is said to be close on the horizon. If you have any questions about ANYTHING, post them on this thread, and I'm sure you'll be answered by someone who has experienced it.
Good luck to you and your treatment. Update us on your journey.
Lori
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Kathy, I'm so happy to see that you have posted! I've missed you!
I'm sorry to hear about your recent scan.Can you feel any lumps in your skin? With me, I could feel very tiny nodules, almost bb like. Inflammation is a real possibility also. My lymph node in my neck was reactive in a PET and a n X-ray. The biopsy showed it was "reactive", but not malignant. There are many reasons for reactive, like inflammation. It could be from injury (surgery), sickness, or autoimmune disease. I have psoriasis, arthritis, and bursitis, besides some allergies (like adhesive tape in bandages). All of these conditions can cause inflammation, which will show reactive on scans. I pray that this is just a cold or infection of some sort and nothing more.
Yes, as the previous post mentioned, Karen passed last month. It really hit me hard... she gave me such encouragement and had great advice to share.. I only hope that if the time should ever come where my days are few, that I would handle it with the courage and dignity that she exuded. May God rest her soul.
The talk about metformim has me thinking again. I was supposed to get a blood test from PCP with the possibility of being prescribed it. My sugar level is very high end normal. Prediabetic was how she classified it, and I'm on lipitor which also increases blood sugar. So I think I'll revisit that topic with both PCP and MO. I somehow got sidetracked with other things!!! It's time I put my pitty party to rest and get back to being proactive. Thank you all for snapping me out of it, and reminding me to be my own advocate.
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*waves hello to LPBoston*. I'm from the Boston area also. I haven't been on lately, but I'm grateful to have been here for quite awhile. One of the great things about this thread is that we can be honest about our fears, something our friends and loved ones sometimes can't understand.
Jan69 - I'm so glad to hear you're on Cloud 9! Don't worry about dancing.....I've done some celebratory moves in your honor.
Slow - I'm hoping that this combo is ass-kicker for you. No bumps in my skin, just an area of skin thickening in the breast that is suspicious. (Can you say biopsy!!!!!, lol)
Slow and Jan - thank you for telling me about Karen. I'm a lucky person. When Luv died, I realized that sometimes we don't get to say goodbye on here. I immediately messaged Karen, and we got our chance to say what needed to be said. It reassures me to know if I'm one of the unlucky FEW (keep FEW in mind, most go on to long healthy lives) who doesn't beat this beast....that I will be greeted on the other side by the great sisters from here that I had the honor of knowing. I would never share a personal message, but I'm sure Karen would have no problem with me sharing how she ended her her last message to me. It captures more strongly than any words I could write about what a positive and joyful person she was!
"Merrily, Merrily, Merrily, Merrily ...."
*exits singing Row, Row, Row Your Boat*
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Thank you so much for the information. I feel I have not done a good job at researching a lot of this stuff on my own. You all seem so knowledgeable. I think I am still in denial after having been diagnosed twice.
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Hi Kathyrrn!!!! Thank you!
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Kathy, Thanks for sharing Karen's message. Tears now flowing freely. Jan
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