Calling all TNs
Comments
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Question for you all. I am trying like hell to get back to working out daily. However, I seem to have extreme muscle fatigue. Up until chemo, I have always been able to walk or do the ellipitcal for an hour without any problem. I now seem to be unable to last for more than 20 minutes before my muscles cramp up. It is not aerobically difficult . . . I barely break a sweat, but my muscles (particularly my legs) feel like they are on fire and are worn out.
I did not exercise much during chemo and rads, so I thought maybe I am just out of practice. But in the past I have picked up from long stretches of laziness with no problem.
Anyone else have this problem? I am not sure whether to be concerned about it.
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Irr: We all suffered after chemo! It will take time to get back to where you were. Chemo destroys bone marrow and muscle along with the cancer, which is why we need lots and lots of protein to rebuild our bodies afterwards. A good magnesium supplement might help with the leg cramps. I have spoken to women who were workout instructors or avid hikers who couldn't even lift a leg after chemo. Hang in there.
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Well, glad to hear it is normal and I will try the magnesium. My muscle cramps in chemo were primarily in my legs, which is where I am having so much fatigue, so I thought it may be related. But I finished chemo almost 4 months ago. Seems like I should be rebounding by now. It is so frustrating. I am motivated and committed to getting back to feeling good and being healthy, but this is really thwarting those efforts.
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I went to a wig shop in our capitol city today. I had looked at wigs nearby but they only had one to try on and then I looked at catalog and tried to match hair swatches to my hair. This was so much better. I could try on a bunch, in the color(s) that I liked and walked out with two. They are lighter than I am now, but I haven't highlighted in six months. I made my sister go this time instead of my DH, who had that deer-in-the-headlights look at the first place. I modeled them for my mom and 25 year old daughter who both thought they looked "so cute" and very natural. My daughter especially would not let me wear something that looked fake or weird. So I'm pleased about that. I estimate my hair loss to start by next Thursday, if predictions come true. I will have a friend come over to cut it off. I'm fair and blonde, so I don't have a lot of color for eyebrows, but the lashes will especially sadden me, because I am such a fan of mascara. But I am signed up for an April 8 Look Good Feel Better class, so hopefully I won't have to go too long without some good tips and help!
I'm wondering if anyone has tried or knows anything about Latisse, which is by prescription only (I think) Brooke Shields and other have advertised it. It is supposed to help eyelashes grow.
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Huskerkkc: Actually, I've read things on the "Hair, Hair, Hair" thread about Latisse. You might want to read through some of that thread (it's really long). Or do a search for it. I "think" I've read glowing reports about it, but then sometimes my chemo brain doesn't remember very well.
I stood in my kitchen for 7 minutes earlier trying to figure out why I was holding some papers and what I was wanting to do in another room for which I was holding a key! As soon as the thought came back to me, I ran like mad so I wouldn't forget again! LOL... thankfully that doesn't happen hardly ever like that, but boy it sure was aggravating!
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Loss of lashes- Sam's Club sells a product clled Rapid Lash that I used with success. Costs @ $50-- a lot less than Latisse.0
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if anyone is looking for eyebrow recommendations - try Anastasia
I used it when my brows fell out and it was great, very natural looking and stayed on most of the day. Much better than eyebrow pencils.
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Husker: I became a huge fan of Revlon liquid stay put eyeliner to compensate for my eyelashes falling out. Good news--they don't take too long to grow back--I think in about 6 weeks they were back. I am part of a Latisse study and it works, but if Heidi says the other one works, it is half the cost! I tried the Anastasia product and the color didn't last for me (I have very oily skin) but I love the brush and the brow forms. They are great for those of us who are more intimidated by the prospect of drawing our eyebrows on. I prefer the Clinique brand of eyebrow powder and brush kit-it's less expensive then the Anastasia ($15) the powder stays on longer, and I like a synthetic brush better. You can get inexpensive eyebrow forms at any drugstore. I have been filling in my brows for years, so I have used alot of different products for this. I hate using a pencil as it just looks shiny and doesn't stay on for 5 minutes on my skin.
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I apologize if this has already been posted here, but I just saw this and it appears very current:
Cancer News News and information at The Breast Cancer Site
New research makes headway in triple negative breast cancerMar 24, 2011 10:03:48 PM
Triple negative breast cancer is one of the most deadly and difficult to treat types of breast cancer, and scientists at Baylor College of Medicine as well as Harvard Medical School have published new promising findings in the journal Cell, according to Bioscience Technology.The practical benefit of the new findings may come much faster than those of other research studies. Phase II of clinical trials may begin in early 2012.
"Whereas many basic discoveries have the potential to impact patients' lives within ten, 20 or 30 years, this has the potential to impact patients' lives within one year," according to Dr. Thomas Westbrook, who started on triple negative breast cancer research as a postdoctoral fellow at Harvard.
What the researchers found was that a great majority of triple negative breast cancer samples - almost 60 percent - were missing an enzyme called tyrosine phosphatase PTPN12. Without this element, the cells could not keep their growth under control, thus leading to cancer.
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Hmmm: Interesting. Where does one purchase tyrosine phosphatase PTPN12? I don't believe I have seen this posted before.
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Hey my doctors are from the Baylor College of Medicine !!!
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Ok, so like MBJ commented... how do we get this missing enzyme??
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New Targets for Aggressive Breast Cancer
March 23, 2011With currently available early-detection methods for breast cancer, many people can be treated successfully. But for the 20 percent of patients with so-called triple-negative breast cancer, the outcome is bleak. Now, however, researchers from Harvard Medical School and Baylor College of Medicine have identified a critical molecular component to the disease. Additional experiments in mice suggest potential therapies involving combinations of FDA-approved, readily available drugs.
A breast cancer cell. Photo credit: National Cancer Institute
"Whereas many basic discoveries have the potential to impact patients' lives within ten, 20 or 30 years, this has the potential to impact patients' lives within one year," says Thomas Westbrook, formerly a postdoctoral fellow at Harvard Medical School and an assistant professor of biochemistry and molecular biology at Baylor College of Medicine since 2007.
The research was published on March 4 in the journal Cell.
Triple-negative breast cancer is an aggressive disease with few therapeutic options. Patients with such tumors can be treated only with chemotherapy. If the cancer spreads, the median survival rate is one year.
The complexity of triple-negative breast cancer renders it so difficult to treat. The disease is extremely heterogeneous, characterized by hundreds of genetic mutations. Without knowing the critical molecular switches that power this type of breast cancer, researchers have no way to develop targeted therapies.
The HMS-Baylor College of Medicine team reports that an enzyme called tyrosine phosphatase PTPN12 is knocked out in 60 percent of nearly 200 triple-negative breast cancers tested. This phosphatase belongs to a class of enzymes that keeps cell-growth pathways in check and cancer at bay.
The team identified the critical enzyme by looking in petri dishes for proteins whose absence caused normal breast cells to become cancerous.
"We were looking for genes that pushed the cells over the edge," explains Steve Elledge, the Gregor Mendel Professor of Genetics and a professor of medicine at Harvard Medical School.
One of tyrosine phosphatases' primary jobs is to turn off another group of enzymes critical for growth called receptor tyrosine kinases. The researchers reasoned that, if they could identify the enzymes that were switched on in the absence of PTPN12, they could pinpoint critical drug targets that might be used to develop therapies for patients with triple-negative breast cancer.
To identify these proteins, the team turned to HMS Associate Professor of Cell Biology Steve Gygi. By taking a look at all proteins activated in cells lacking PTPN12, the researchers found two enzymes crucial for breast cancer's progression, or metastasis, EGFR and HER2.
In addition, the team used biochemical methods to identify a third receptor enzyme, called PDGFR-b , that was also regulated by PTPN12.
These results collectively suggest that the improper activation of these three tyrosine kinases could be the major cause of triple-negative breast cancer.
"We've grabbed a molecular foothold in triple-negative breast cancer," says Westbrook, who discovered PTPN12 as a postdoctoral fellow in Elledge's laboratory. "We are now starting to understand the disease better. Even more important, we have a rationale for a combined drug therapy for the disease."
Their idea: to treat the disease, turn off the trio of enzymes with drugs.
To test their strategy, the team took advantage of two drugs already being used to battle other types of cancer: laptanib (Tykerb), which turns off EGFR and HER2, and sunitinib (Sutent), which turns off PDGFR-b.
The team treated mice with triple-negative breast cancers with either sunitinib or laptanib, or both. In mice treated with sunitinib alone, tumors shrank by nearly 80 percent. But in mice treated with both drugs, tumors shrank by more than 90 percent-and life expectancy more than doubled.
These results suggest that sunitinib and laptanib (or similar drugs) together may be a promising therapy for people with triple-negative breast cancer. And because both drugs are already FDA-approved and sitting on pharmacy shelves, they can be tested immediately in these patients.
"This research underscores the relation of basic bench science to human health," says Elledge. "If you know what's driving the cancer, you can think about targeting that for therapy."
The team hopes to launch a phase II trial for triple-negative breast cancer by the beginning of 2012.
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Babs37: Wow, thanks for posting this. This sounds very promising. The best part is that this may impact patients within one year, according to this article.
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My comment: Get these drugs to people who are desperately needing them NOW. Do away with the red-tape bs because some people don't have much time left and if it were me, I'd say bring it on and let me test it... at least it gives a fighting chance.
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cc4npg- I'm 100% with you on that!!!0
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BRING IT ON!!!!!!!0
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No $hit, where can I sign up? I'll believe the early 2012 timeline when I see it.
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For what I understand, there are already approuved drugs like Tykerb and Sutent that they can use on us TN that could boost are chances. If they are already approuved and tested drugs and they can use them on HER+ women, why the hell do they have to go through all the research and stuff to give it to us TN women? Don't they realize that we don't have all the time in the world for years and years of research if it's not necessary? I am seeing my onc on monday and I am bringing this article. I will let you know what he has to say about this.
Have a great weekend everybody.
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Babs and Starling- Thank you for posting such positve information.
Special prayers tonight, not only for all of us, but for the scientists and doctors that are working to find a cure for us.
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Amen to that NavyMom!
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beetle, my port scar felt raised and lumpy for a month or so, but it feels flat now.
suze, the lack of eyelashes was almost as bad being bald. My eyes watered constantly and I was constantly dabbing them with a kleenex. Several people asked me if I was crying! And I dabbed and blotted so much the skin underneath my eyes actually got chapped. It was hella annoying.
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Intresting information the sooner they find
Cure the better I say , I finished chemo in feb and just starting to get my eye brows back now just , I Now just started rads my third day have 30 To go
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Has anyone had skin sparing surgery? I will be having surgery late June and they mentioned this at the beginning of my treatment...I've read about it, but wanted opinions from ladies who have had it done....
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Angelice: I like your name.
) Welcome to our thread! 0 -
What freaks me out is that the article says that for the 20% of cancers that are tn the outcome is bleak. That comment scares me.
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ya Titan me too, but it gives me an opportunity to feel guardedly optomistic.
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Mo0279: PM me and I will help get you to the picture forum. I and many other women on these boards have had this with great success!
Babs: Wow, I immediately forwarded your post to my friend who is Stage 4. It gives us all so much hope!
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Titan: I think they are speaking in the same general terms that many of us have heard from oncologists. TN has a bad name for so-called "worse" outcome. It takes time for people to start viewing it differently... it's like an old habit. TN outcome isn't "worse" or "bleak" necessarily. It is a different type of cancer that begins for very different reasons than hormone positive, and I believe there are a whole host of reasons we get cancer, which is why I don't think there is necessarily one or two things we can change to avoid getting it. My belief is that, like with some other diseases or illnesses, we need to focus on curing it rather than preventing its occurrence... I think there are too many variables in the prevention and some people just get it irregardless. I think the writer used the word "bleak" because there is a general lack of understanding of TN. Since we tend to recur quicker than hormone positives, and since TN is generally grade 3, we've aquired the labels "worse" and "bleak". But, they often fail to complete the thought behind the above two facts.... that TN actually dips well below the line of hormone positive after a certain number of years, thus making it way less likely to recur and giving TN a better prognosis after that time period. So... I don't think we are worse or more bleak... just different.
Funny story... when I was guardian over my paternal grandma, she had several health problems. She had a slow growing tumor on her face (20+ yrs had it), COPD, and an aneurysm behind the tumor on her face. One day, my maternal aunt asked me if she was terminal and I laughed. We are all terminal but our health problems don't necessarily make us moreso. My paternal grandma lived 20+ years with that cancer on her face, and she may or may not have been the carrier for BRCA2, but she lived to the ripe old age of 89 in spite of all the problems she had. Oh, and the cancer didn't kill her, neither did the aneurysm. Her lungs just gave out, but she had smoked for YEARS... like since she was probably 16.
Ladies, our outcome is not bleak... our cancer is as individual as we are, and there are thousands of TN survivors out there who are years out that would agree.
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Angelisa: Thanks for sharing that, and I agree with you--just because we are TN's doesn't mean our future is bleak. Too many variables and we are individuals.
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