Calling all TNs
Comments
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Cat, so happy it is all done!
Guygirl, being in a crowded or hot place can trigger fainting. Before air conditioning people would drop like flies in church when I was a kid.
simple, hang in there the rads will be over before you know it!
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Slv58:
Scoobydoo, may I ask about your thyroid nodules?
Sure. I actually have hyperthyroidism. So I have an enlarged thyroid on the left side, which they saw through ultrasound. I had to undergo a biopsy on the large thyroid which came back benign. I am still hyper so she wanted me to do a 2 day iodine scan test. In that test they can see which glands are producing all the excess hormones. They can also see if there are any cold "nodules" and I had a cold nodule (attached to thyroid) which was the same one they biopsied before. So based on protocols she wanted me to have it biopsied again. She has already decided that she would have my thyroid radiated to take care of the hyperthyroidism. Doing my own research I looked into thyroid cancer. Guess I am always a worst case type of person. I found that 99 percent of all thyroid cancers are curable. There is only a 1% chance that anyone has the really bad kind and it only kills if it is untreated for a long period of time and spreads. So really you should not be concerned. It is good for them to biopsy your nodules if your endocrinologist thinks its best. I found the first biopsy pretty simple. I only felt a small sting from the lidocaine. Hope this helps.
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Cat so glad all went well with the anaesthetic but sorry you are so sore. Hope those pain meds are helping. When do you think you will the "all good" results. Will be waiting along side of you.
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Cocker - thanks for thinking of me. I hope all your scans come back clean. My biopsy was just to get more tissue to send out for some clinical trials I am interested in. They had used up all the tissue I had in archives. So, even though I think they are testing it to make sure it is still TN, I do not expect any other news. So far, since starting taxol again, I do not see any improvement, so anxious to start some trials with different drugs. The most interesting trials are getting targeted treatment for Her2, even though I am Her2 neg by FISH standards. Recent research in the last couple of years is showing great promise in using HER2 drugs with TN people!! The only way to get it is through trials, so I am hoping to qualify for at least one of them.
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Cat, who requested your biopsy information? Did your regular oncologist submit you for a trial? I'd also like to apply for some trials, but don't know where to begin. I asked my regular onc about the Celldex METRIC trial and if he could send them my information, but he didn't seem that enthused about it and I haven't heard anything.
I am so tired of being my own advocate. After I start whole brain radiation, I may have memory issues, so if I don't do it now, i'm worried I'll just slip through the cracks.
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Cat - When you were dx'd with a recurrence, it was picked up on your MRI and you had no other symptoms ... so did your neck nodes then start to show enlargement after starting treatment? I didn't know they could use up all the tissue in archives. I thought it was put on slides, electronically imaged from there and able to send it to several other sources. When I had additional labs and testing done to determine if I was TNBC, we were able to just request the slides again, which is of the tumor in suspension. Is it different for the trials? They have to have the tumor there? Glad to hear your procedure is done, and best wishes for you that you are a match for the trials that you have checked into! How much longer until you know?
Cocker - thinking of you and praying for great news!
FierceBlueBird - When is the next phase of your treatment starting?
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Bluebird - the first trial I was interested in was the CDX-011 and my MO's office participates, so he sent my tissue to them and they said it was not enough tissue and there was no more tissue available. That is why I had another biopsy done so we could send more tissue. His office will send the new tissue to them and I should find out if I express the gpNMB protein to be eligible. I found the other two trials (and more) on my own. I went to clinicaltrials.gov and searched for ones in my area. Each clinical trial has information along with a contact at the end of the trial document and I emailed them on my own. I haven't even discussed them with my MO yet but wanted to get going on seeing if I would qualify. One of the trials sent me the information they needed to see if I am eligible and I took it to my MO's office and signed a release for them to send the information and medical documentation to the clinical trial center. Their research nurse is supposed to call me back tomorrow, but I have been told it takes about 2 weeks to do the testing to see if I qualify. Every clinical trial location usually has one nurse that is assigned to coordinate trials. The other trial has only asked me for information by email. I sent them what they requested and am waiting to hear the next step. I would suggest doing a search on your own and look for ones you are interested in and think you are eligible. They all list eligibility requirements. I plan to discuss them with my MO when I see him on Friday. The HER2 neg trials are nct01670877 and nct01048099 if you want to search for each of them.
Inspired - after the MRI showed spots in my lungs and mediastinum, I went for a PET/CT and that is what also showed the enlarged nodes in my supraclavicles and neck. Once I knew where to look, I could see/feel how large they were and they have been getting bigger ever since, even after starting treatment, and my MO agreed. Anyway, he wanted to get more tissue before they shrunk (he is more hopeful than I am that taxol will shrink them)! I think for some trials, they need actual tissue to test for a certain protein, mutation, or whatever they are looking for to qualify for the trial. I don't think it can be done just by looking at a slide. Some trials just need blood, others may need tissue, and the trial documentation will usually list eligibility requirements needed to qualify.
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Cat, I too am trying for a trial, and the first step was signing a release from my current hospital to send tissue samples to the trial site. So yes, I guess they have to actually test the tissue and not just look at slides. I do think they look for certain proteins on the cell membranes, as well as other possible genotype info. My 1st try is for the PD-L1 trial, but my MO also has 2 others in the wings incase I don't qualify.
I go tomorrow for my 2nd halaven tx, but I don't know if the results of trial testing will be done so soon. And I also have a nurse navigator in charge of the trial admissions.
To those with thyroid problems, in my VERY limited research (after my niece was dx with thyroid cancer last summer), I found there is a link with certain breast cancers and thyroid cancer. I believe its a mutation of the PTEN gene. I don't know how much knowledge is certain about this link, but it may be worth it to ask about genetic testing. In my opinion, I believe in years to come, many links will be found in the genes for numerous diseases and conditions. As I said before, Since cancer is an uncontrolled growth of cells, could it be linked to my uncontrolled growth of skin cells (psoriasis - an autoimmune disease).
On a positive note, daughter just informed me she qualified for debate nationals in May. She will travel to Chicago. SO PROUD!!!
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That is awesome Lori! Congrats to your daughter!
Friday getting nodes ultrasound, Monday see the RO.
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Hi Lovemydobies - I just celebrated a year of having a double mastectomy with reconstruction and chemo - last chemo was July - seen Oncologist in August and just seen her 6 months later in March. No scans, no blood work, only time they will do something is if I have a pain somewhere for more than 2 weeks. It is not easy to live with but they say they did everything possible to kill the cancer and they are not concerned. I was actually going to sign up to see a therapist to get me on a road where I am not thinking about recurrence on an hourly basis. I have a very busy life but this recurrence is consuming every bit of energy for this is my second time around having breast cancer. Keep moving forward and think happy thoughts!
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For thyroid and relation to BC, you all might want to contact: SylviaExMouthUK ... I believe she has a lot of research regarding this as she also had a thyroid condition.
That's true, I hadn't thought about that, to determine chemo sensitivity and genotype tumors, they need the tissue samples. Cat, I'm glad to see that your Onc is very hopeful about the Taxol ... how soon before you have the next treatment?
LPBoston: I just realized by your profile line, that you had TNBC in 2004. How did you discover it in 2013? Was it through a routine mammogram?
There is a site that will send you information on trials that you qualify for, if you fill out the info - it's a trial alert service. Of course, the info collected is not all the info that is required in a trial, but it's a big portion of it, enough to narrow down the trials for TNBC and a certain stage, etc. They receive their data from the national trial database as well, but the only extra difference is that they have it set up to notify you automatically when a new trial matches your selection criteria. It might be worth it to fill out the info and get updated automatically when new trial information is available, just in case you don't do a search for a few months and a new trial starts.
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LPBoston - I know of what you speak. It took me awhile to get to the place where a recurrence doesn't haunt me daily. Now I just think about it when it is mammo time. So you were diagnosed ten years ago with hormone receptive BC and now have TNBC? Wow. I have heard of it the other way around mostly. I think about that all the time in terms of whether I should have had a Mastectomy versus a Lumpectomy. I kinda now wish I had just removed them right away. But oh well. I have also said that if I ever have a flare up they are gone!
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Do you ladies know if you get a double masectomy if you ever need any kind of mammo? I heard they still have to look at the outer edges.
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Scoobydoo, I have a double mastectomy and was told I will never have a mammo again. My general surgeon told me that and she said she removed all the breast tissue. Now, MRI, CAT scans, PET scans, yada yada... I think are a different story. But I was told never again.
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Hello slowloris
I was interested to
read your post about a possible link with certain breast cancers and
thyroid problems.I was diagnosed with
triple negative breast cancer and an overactive parathyroid at the
same time in 2005. I have read research connecting the two. You might
want to read up the posts in the following forums.Invasive Ductal
CarcinomaThread: Parathyroid
disease and breast cancer.As well as
Not diagnosed with a
recurrence or metastases but concernedThread: High blood
calcium levels.I hope this is of some
help.Best wishes.
Sylvia
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It makes me furious to read of a link between thyroid conditions and breast cancer. I have this crap and I have been struggling with hypothyroidism for years. This is the first i have heard.
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Hi Scoobydoo - I was so uninformed and naïve when I first had BC - if I had only known more I would have had them taken off back then. With them off there is nothing to mammo anymore. It is a wait and see if anything pops up somewhere else in my body. Not a good feeling but something I need to deal with, come to grips with and move forward. That is what I am battling. I am a very strong minded person and need control of my own mind hence why I have never gone through therapy but I think I am finally caving and not feeling good about it.
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InspiredbyDolce - I was diagnosed in 2004 with Invasive Ductal Carcinoma on my left breast and went through chemo and radiation but in 2013 when I was having my normal mammo they kept seeing something on my right breast but couldn't figure out what it was. Went through an ultrasound, breast mri and needle biopsies when they still couldn't figure it out so they asked me what I wanted to do. I decided to take them both off. Short story long it was precautionary but it ended up being TNBC. Needless to say I was floored. I had needle biopsies in my right breast in 2003 - a year before my diagnosis on my left breast in 2004. I wish I had the double mastectomy back in 2004 but I was so uninformed and naïve back then and just did what I was told without researching anything.
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I got goose bumps reading your story LPBoston!
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We've been talking about low dose aspirin in the Fitness Forum, and thought this info might be of value, so dropping it in a post. There is mention of aspirin and Triple Negative in a few of these links.
"Low-Dose Aspirin May Halt Breast Cancer"
"Aspirin
and Cancer Prevention: What the Research Really Shows""Aspirin
holds promise for treating and preventing breast cancer, lab tests show" -
I am considering the bilateral yet again after reading the thyroiditis information. I am not sure I will feel safest with a lumpectomy now. I plan to start a binder this month of all my articles to refer to and to show my Dr.s I will not go into this blind thanks to you ladies and my own research. thanks
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Inspired, thanks for posting the articles about aspirin. I started taking a low dose aspirin a few weeks ago for cancer prevention. I take it at dinnertime. It's interesting that it seems to help particularly with TNBC. It's such a simple thing to do and I figure it has other nice side benefits.
I'm getting #9 of 33 rads today. The rads seem to irritate my already irritated nerves in my underarm area. I see the RO on Monday and will talk to him about that. My digestive system is seeming to finally get used to taking metformin (also for cancer prevention). I'm supposed to be increasing my dosage this week...we will see how that goes. Since I'm going to be taking it for a long time (at least 5 years), I'm not worried if it takes me a few extra weeks to get up to the full dosage. I know my body WILL adjust, and I will get there with it.
I made it to aerobics class 4 out of 5 days this week. That is huge for me. My stamina and strength have improved wonderfully since finishing chemo and getting through surgery. I know the last few weeks of rads can be rough with regard to skin issues (and also fatigue) so I haven't created any "cast in stone" goals for exercise while doing this part of treatment. I do like how fast rads are so that part is nice. Hubby time it the other day. It's about 5 minutes from the time I go in until I come back out again. We live close by to where I'm getting rads so that is also very nice. Much different than the 2 hour drive each way I used to make for chemo and all my other doctor visits.
I hope everyone is doing okay. Thinking of you all with fondness.
Hugs,
Kay
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simple - glad that rads are going well for you. I found that it got worse as time goes on, and the hardest part for me was the 2 week period after they finished. But we are all different!! You may not get the fatigue - I kept waiting for it, and it never came - so that was a plus. Use lots of cream, and prevent skin on skin contact - especially while sleeping - I used a sock and filled it with cornstarch (very malleable and conforms to your own shape) to slide in my armpit at nights - it worked great. I also exercised all the way through chemo and radiation - I found it very beneficial.
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Read the posts about the relation between thyroid issues and breast cancer. When I was diagnosed with TNBC few months ago, I remember an Oncologist clearly asking me if I have Thyroid or not. Yes, I have hypothyroidism. And she mentioned that there is a suspected link between it and breast cancer, mainly TNBC.
I developed thyroidism in 2008, 6 months post the birth of my daughter. It was all the time under control, except for one episode in oct 2012 wen it showed as a red mark again. I went to an endocrinologist who said that the diversion is not remarkable and didnot change my thyroid dosage. I started having fatigue, skin issues, hair issues, a little bit weight loss and I went again to a different doctor who immediately reduced my thyroid medication dose ( he mentioned my dosage should have been reduced 8 to 9 months ago!) He also mentioned that in a few months I should notice reversal of the side effects caused due to thyroid. But it didnt happen..rather in 4 months I got diagnosed with TNBC. I know another woman who was hypothyroid, got diagnosed with TNBC, had a recurrence after 5 years as bone mets and unfortunately is no more. I am getting more and more sure..there is a strong link between hypo/hyper-thyroidism and TNBC. Pls read the link below
http://hypothyroidmom.com/is-your-thyroid-killing-...
But for women like us who have thyroid issues ( hypo or hyper) and TNBC... is there any other treatment or trials going on??
also
there is a link I am posting here from MD Anderson website, which says that only 40 percent of TNBCs respond to chemotherapy. Can anybody provide some explanation? does that mean 60 percent TNBCs will have a recurrence. TNBCs are usually known to respond well to chemo.
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wow, this possible connection has me thinking. I was diagnosed tnbc last jan. I was diagnosed with hypo in November. I do suspect I may have been hypo for over a year as I had so many symptoms but my doctor just fluffed it off and blamed getting older.
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I haven't commented in a while but read often! This is the easiest way to update everyone...
wwww.katebeatingcancer.blogspot.com
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InspiredbyDolce - I hope my experience helps someone else make a smart decision when they are first diagnosed - there are so many options these days but yet too much information for the mind to consume! Everyone is different and you just have to be smart and go with your gut and what you can handle. It's bad enough we all find ourselves in this situation but to have to make decisions on top of it is mind boggling and live with "did I make the right decision"? I just have to get my head out of the clouds and move forward and be happy I have a full life, a great husband and two wonderful sons.
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My Onc said chemo reduces risk of recurrence by 30%. He further mentioned that means 30% of the TNBC population responds to it. I had always previously thought it meant everyone had a 30% risk reduction if administered.
LP: I too agree with going with your gut. When faced with multiple choices on one thing sometimes our instinct can provide clarity or at the very least introduce additional communication needed to make a decision.
Prayers for Bluebird ... she is back in the hospital being treated for pneumonia.
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LP: What makes you regret not just taking them off back then? Did you have reoccurrence? What treatment did you do? I am trying to help my mom decide what to do to treat stage 2 grade 2 tnbc. She has had a lumpectomy so far. I just want to be knowledgeable to help her if she wants my help. I know the treatment decision is killing her, she does not know what to do:(
Inspired: 30% of TNBC's respond to chemo? Meaning only that percentage of them actually have reoccurrence prevented directly because of chemo?
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OK, so this 30% issue means that we all have a 70% chance of recurrence??! Great! My Onc told me if I did chemo that I had about a 78-81% chance that it wouldn't come back. Is this figure just BS?!! Now I'm scared!
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