Calling all TNs
Comments
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OBXK.....I am so sorry to hear about your report. Hang in there and try not to despair. I guess to carry on with your normal routine will be the best medicine.
I wish some better news for you next time
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Schatzi they didn't recommend any pain meds because she's already on them because she had major back surgery prior to being diagnosed with TNBC. They just told her to keep taking the ones she's already on. My wife, Kathy, just finished her 6th of 12 weekly Taxols along with Cisplatin. So, she's halfway done. She is starting to get a little bit of neuropathy but nothing overwhelming. The achy bones and joints are what's bothering her most. Even still, she has not missed even a day's work. Being TN, I don't think she'll be on any targeted hormone (antihormone) therapies following Tx but she will most likely be doing radiation. You indicate in your "signature" that you are ER+. That's probably why you're taking targeted therapy.
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I wonder why Cisplatin is not a choice under Chemotherapy when you create your profile. I see that Carboplatin is, but not Cisplatin. I know they're similar. I checked Carboplatin and have to edit it when I post.
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Oh Karen, My heart is breaking for you and your family. I'm so sorry that you have to face another scary situation. I'm making a big batch of peach jam today and it is dedicated to you, my dear! Peaches are so sweet, just like you. I'm sending you big hugs and wishes for a fun summer with your sons and husband.
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ALHusband
I am basically TN because I am only 2% ER+....my MO says "those are only words"...cold comfort. He believes at even 2%, it is worth a try so that's why I am taking Arimidex. He says I passed the first year so why change things even tho I complain about my hair loss and bone loss?
We will see what the next mammo shows in August. I put ER+ just because at the time, I didn't know I was TN.
I never saw a path report until this year and just did as I was told! He did say if I insist on stopping it because of SEs, he would say OK but I figure if it aint broken, don't fix it!
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OBXK: So sorry for your news. Holding you close to my heart.
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Thanks friends.
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Karen I feel sick to my stomach with your news. See my PM. I cannot accept this. We have just got to make a plan. There must be something we can do.
All you ladies on here, help me out. You know the doctors in the USA and I don't. What else can Karen try. There must be something.
LUV where are you, we need you. Do you have any suggestions for our Karen. I can't keep crying and doing nothing it's not helping anyone.
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Karen,
I see that you are in NC like I am, have you thought about going to Chapel Hill? One of the leading triple neg researchers is there, I forget her name but I can look it up.
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Her name is Lisa Carey.
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Oh Karen, my heart goes out to you. So very sorry to hear your news. Surely, there's something else to try? Hoping you, your family and your docs can regroup and find a path forward. A big cyber hug to you.
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Hi ladies! Was wondering if anyone could give me some insight on my current situation. I was diagnosed with idc at my first ultrasound for my pregnancy. I started chemo on November 1, 2012 in my 2nd trimester and delivered a perfect, healthy baby boy at 37 weeks on April 17, 2013. Had my sentinel node biopsy on May 20 (all nodes clear) and my double mastectomy with reconstruction on May 28. Pathology reports came back that I had a TOTAL pathological complete response meaning there was nothing in there. No dead tumor, nothing! Doctor said this was the best possible scenario and doesn't happen too often, but now they are telling me I don't need radiation. I just assumed I would be getting radiation because I am TN. Getting a second opinion from the Cleveland Clinic, but just curious as to what your experiences were with radiation/ no radiation. My rad onc said that in my case the risks outweigh the benefits.
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Adjtoth- I had the same thing happen, got a PCR and we did surgery with no radiation.
Edited to add: Huge congrats on your baby! :-)0 -
Karen I am SO SORRY..........
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Yay: Chemo worked........ thank God. I will proceed over to get radiation started next week. I will meet with the Dr. not start yet. Thank you for all the prayers and support and PLEASE KEEP THEM COMING as I face this next journey in life. My blood pressure med is kicking my butt too so prayers we can get that straightened out soon would be appreciated. Thanks again and thank you Lord.
I did call over and talk to the man who did my Pet Scan pertaining to keeping the prosthesis on. He promised me that they could see, he said that if it were a straight on shot then no they would not have been able too but they are shooting at 360 degree angles and they can see under it and everything. I specifically ask can you see my lymph nodes and he said yes he can. He even told me to come pick up a copy and look at it myself on my computer to ease my mind that they can see it. I will probably do this too. I know one thing for sure though, next time I am taking it off just to ease my own mind.............wow what cancer can bring to mind.
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Thank you so much! I guess I'm just on the fence about it. Was expecting to need it and now I just feel like if I don't do it I'm not being aggressive enough. Why did they say no radiation for you?
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They said because there were zero cancer cells left and because it never went to lymph nodes that I didnt need radiation. I was about 50/50 prior to pathology that I would need it because my tumor was large at 4cm. Im glad they said no radiation, I would rather have that as an option if I had a recurrance.
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Can anyone tell me what testing will/might be done once my wife completes chemo? For instance, will there be a PET scan? A mammogram? I know all doctors may be different in their approach, but what is common?
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All my testing was done up front. Did chemo first, then straight to surgery, now in radiation. Other than blood work, I've had no tests done (other than those pesky "xrays" in radiation.
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Adjtoth, I believe node involvement plays a big part in having to do radiation. I had 2 nodes involved before chemo killed everything, and I was scheduled for 29 rad treatments because of that.
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GoWithTheFl yes, my wife had all of the tests known to man "up front". I guess what I'm asking is once chemo is complete, shouldn't there be some kind of tests to see if treatment is on track? Mammo? PET Scan? Something? What if the tumor recurred? Wouldn't it be beneficial to know if you need more chemo or something? Do I sound like an idiot? If I do you can say it and I won't even be insulted. It's just that nobody gets any practice at this stuff. I can't wrap my head around the possibility that they just fill you full of poison for 12 weeks and wish you well.
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I had BMX with right ALD with 3 positive nodes. Then went to Chemo. No rads because at the time, the recommended tx was rads for 4 or mor positive nodes. I asked repeatedly because of the aggressive nature of TN. Was to "No Rads" and lets just keep that option in our back pocket. At the time I was a bit miffed, but now I have gotten over it.
AL Hubby, It is true that each Onc has their own way of doing things. But I believe that your wife will need Mammos every6 months and possibly some blood work every three months or so. Like I said, every Onc is so different. Mine would do a PET scan if I desired every 6 months. If I feel good, I decline. So much radiation exposure is not good either. Some oncs do not believe much in Tumor marker blood tests either. Keep asking those questions, tho. And if you think your wife needs something from the Onc, by all means ask for it.
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Hi everyone!
OBXY-Sorry to hear that you had progression. I hope the next treatment is gentle on you and works to kill those horrible cells.
Stupidboob-Great news on your results!
CS-Great cloud picture!
I want to say thank you to OBXY, I think it was you that mentioned the statin drug causing muscle pain. Around the time of my hysterectomy my doc had increased my lovastatin dose, and I had mentioned to her more pain and asked about the increase causing it, she said probably not but discontinue for a couple weeks to see if it got better, and it did not get much better, so I resumed taking the statin. I still had my doubts and when you mentioned it I decided to stop the lovastatin again. Well, very gradually I started to feel better. Last night I got worried about not taking the medicine so I took it. OMG! The pain was horrendous this morning! I almost went to the emergency room. My hands were cramped closed, had a hard time opening them, my head hurt, my legs were terrible, especially my calves, and when I walked I felt so weak. I know this can be a dangerous se of statins, but I took a couple of advil and went back to bed. I woke up about 1pm and felt a bit better, still very tired. I am never taking that medicine again! It was crazy awful and I don't know how I got through it all those months. So a big THANK YOU to make me think about this more! Did a little more research and found that se's tended to be worse when taking 30mg or greater, I had gone from 20 to 40mg.
So, I killed my plants. I also had bought 2 tomatoe plants and I managed to kill them within a couple of weeks. I wonder if the potting soil I had was too rich. I ph tested and it all was in the range it was supposed to be in. I am calling myself the grim reaper of plants. They shreak in terror when they see me coming!
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This has been a battle with my oncologist since being dx. i had a mastectomy, chemo and then radiation. he does not do ongoing blood work or scans. he only orders scans if my symptoms warrant it. it has taken me 8 months to accept this and i'm not completely comfortable. i did have ongoing back pain and he ordered a bone test so he's been ok so far. we kind of argue and i like it!
i had radiation bc of my age (32), brca1+ and TN - my oncologist recommended i do radiation. everyone said i was in a gray area and i could decided. i did it.
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Alhusband- I was told that I would not have any scans unless symptoms warrant it. I wont even have mamos anymore because I had DMX with diep recon. There does seem to be a myriad of experiences when it comes to doctors and how they do things.
Bak94- LOL I kill plants too. :-)0 -
BAK I think that picture was trying to tell me something. You are not alone with plants. My daughter kills every plant she has because she forgets to water them. The poor little sods must be gasping but at least you do water yours dont you?? lol
I am so glad you are not taking that medication anymore. A lot of people I type for has a lot of trouble with statins. Can't do much good if the side effects are worse than the original symptoms can it.
You never answered my earlier post. Who is that gorgeous baby in your picture. It looks delightful.
I hate sitting by and seeing all my friends on here with progression/recurrence and not able to do a thing to help them. It really gets to me. I feel like shaking the doctors and saying for gods sake do something. There must be other trials or some medication they can try. Aren't they duty bound to do this or do they just give up on us too because it gets too hard. I feel so frustrated with all of this at the moment. Sorry for the rant ladies but I find it so hard that OBXK has accepted the situation because there is nothing else she can do. All these flaming 'breast cancer break throughs' the docs talk about seem to come to nothing.
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Alhusband: You do not sound stupid! I think most of us feel the same way you do. I had all of my testing before surgery and I never had a PET scan! After surgery I did chemo for four months. My oncologist said the same thing to me. He will monitor me through blood work and tumor markers and I will have a breast MRI once a year. Scans will not be ordered unless blood work warrants it or I have symptoms. They don't want to expose you to unnecessary radiation and I understand that but how do they know the cancer is gone if they don't do a scan? It is very scary. I go for my first round of blood work at the end of July. I am sure I will have anxiety leading up to that appt!
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I can't keep plants either. I don't have a green thumb, and well, with 2 cats they wouldn't last long around here anyways.
AlHusband: You do not sound ignorant by any measure, this is a lot of information to learn, that weren't prepared for, and it does take a lot of research along the way to understand the choices and how they relate to you and your wife. The mere fact that you discovered the boards, and joined to represent your family and get more understanding and support proves just that! We are all here to help you both.
For me, this has been my Onc's protocol: Every 3 months he runs a full panel of labs. One set of results I get right there in the office. The next set I get the next day. Because I'm a stresser, I make my appointments on a Thursday, so I can have my results on Friday. At 6 month intervals he also runs 2 Breast Cancer Tumor Marker Tests, but he does them mainly because he knows I'm always looking for a reassurance. Some places, such as John Hopkins Hospital, will not run them for early bc patients, because they can be unreliable. He also checks my Vitamin D3 level, at my request.
I have breast exams from my Plastic Surgeon (even though I have saline implants) and I see him now every 6 months. On the 6 month schedule is my Breast Surgeon and I have it coordinated so that every 3 months, one of the two doctors are looking at my breasts!
I had a Mammo/US at 10 months post-surgery to confirm scar tissue, then an MRI at the annual follow-up. I am currently trying to find out how to get surveillance 2x a year, perhaps ultrasound at 6 months and MRI on the annual updates.
JenJen: Let your gut be your guide. If you are not 100% comfortable with your Onc, have you considered having a heart to heart with him? I had to do that with my Onc very early on (I showed up unannounced and pulled him aside) because he and I needed to work out a few things. Now, we have a really good understanding of each other and what we expect from each other, and I don't know what I would do without him now. I often say if we won the lottery, we wouldn't be able to move, because I wouldn't know how to bring him with us.
I have heard of a couple other girls who also do not have labs ran, but if you aren't comfortable, figure out what would make you happier, and see if you can get that to work out, either by talking to him to incude what you aren't getting, and maybe find out more about why he thinks his current protocol is adequate, as he might have some valid points. You could also try referencing in the NCCN Physician Guidelines to see what standard protocol is, and maybe even photocopy that info for him, and show it to him, and convey this is a great expectation written and analyzed from the Top 30 Docs in the U.S., and you would like to follow it. 0 -
ALHusband -- may be because we are both going to CCI but Zyrtec is what they told me at double dose. I was taking it with AC for the Neulasta shot. I would take it for 5 days each cycle. I never had issues with bone pain. I just used the generic brand.
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Hi everyone. I was gone for two weeks so I have a long way to catch up. Regarding the metformin clinical trials, here's the link to the discussion here:
Forum: Clinical Trials, Research, News, and Study Results → Topic: Metformin-Anyone on this trial?
Here are a few points:
Metformin doesn't necessarily lower cholesterol, that's not its purpose. To the extent that it aids in weight loss, your cholesterol might benefit. Metformin's main purpose is lowering blood sugar in diabetics. Researchers discovered that diabetics on chemo and taking metformin had a better response including complete responses.
The dose for the trial is 850 mg twice a day. The doctors start you at a lower dose and gradually raise the dose until you get to the 850. Metformin can cause tummy distress that usually passes once your system gets used to it.
I have been on metformin since 2001 so its preventive properties for breast cancer were lost on me. I'm on 2000 mgs a day and I've had no issues. It does lower my blood sugar but I never go too low. It's dirt cheap - $10 for 3 months at WalMart and no insurance needed. And I've not had any issues with my metabolic panel - actually, despite my stage iv cancer, my blood sugar has stayed in the perfect range. The only people who should avoid metformin are those who are heavy drinkers.
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