Mucinous Carcinoma of the breast
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VR, I don't have questions to add for your meeting tomorrow. I just want to thank you for all your generosity here, and pretty much anywhere i see you popping up on various threads. I look very forward to hearing what you learn.
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VR, I'll be with you in spirit tomorrow when you meet with the researchers.Can't wait to hear what you learn. I appreciate all you share with the BCO sisters!
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Okay....I don't have much time now for a full account of my meeting with the Sloan Kettering researchers. I will elaborate on our discussion one day this week when I have some time to digest what I've learned. In the meantime, here's a BRIEF discussion....
First off, the researchers were so gracious and patient with their time with me. I want everyone to know that they are so enthusiastic about their noble work. A blessing for all of us. Not just us Mucinous sisters...but ALL of us! I promise when I get into the details of their work, you are all going to be blown away AND you're all going to find out how "special" we really are! Us "outliers"...those of us with rare breast cancers might help them also discover how to understand and treat your garden variety of breast cancers as well. Yep! Think about it! They believe that by studying us they will essentially be able to understand more traditional breast cancers.
Towards the end of our almost three hour meeting, I shared our thread with several of the researchers. They were as excited to meet us, so to speak, as we were as excited for VR to meet them on our behalf. Finding us has created a treasure trove for all of us.
Going forward they're going to need our help....so stay tuned for the details!
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VR - Thank you so much for sharing the "BRIEF" version with us so quickly. I've been checking in to see if you'd had a chance to post on the thread. I can't wait for the longer story. Thank you so very-very much!
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Awesome, VR!
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VR - amazing news. Researchers are studying our type of cancer to make progresses for all. I´m really excited to hear more. Dear VR blow us away with your news and thank you.
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Thanks, VR, for the quick update. I, too, am looking greatly forward to hearing the full version! It will be so good to hear from folks working directly on our 'outlying' cancer, and pretty exciting to hear how they think it will contribute to treating other breast cancers. Thanks again.
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Okay....I'm going to begin. But keep in mind, I'm going to be posting over the next week or two more details as I accrue more understanding about what we discussed.
First off, I am going to give you some background information. Mucinous cancer can occur in other organs. Let me repeat what I just said. Mucinous cancer can occur in other organs. I'm not referring to metastatic mucinous breast cancer that occurs in other organs. Mucinous cancer can occur in other organs. When I was initially diagnosed, I kept noticing other types of mucinous cancers. After a while, I had to insert the word "breast" along with "mucinous cancer", otherwise, I would be directed to all of these different types of cancers. YOU DO NOT SEE THIS WITH OTHER TYPES OF BREAST CANCERS. Mucinous breast cancer is the ONLY type of breast cancer that has "cousins" so to speak. Now what is so interesting about mucinous breast cancer is that when mucinous cancer is found in the breast, it is usually not aggressive. However, if you got a mucinous cancer in another organ, such as the salivary glands or the ovaries, it is often VERY AGGRESSIVE. So researchers are very curious to find out what it is about mucinous cancer in the breast that makes it not act like it's cousins.....Interesting? Once they unlock that mystery, they may begin to understand the mechanism that makes certain tumors indolent or aggressive. We know the characteristics of aggressive tumors, but we still lack a full explanation of how one tumor cell BECOMES aggressive rather than indolent. So these researchers are looking closely at mucinous breast cancer to see how it DIFFERS genetically from it's cousins.....See how special we are!
The researchers also told me that mucinous breast cancers don't seem to have as many mutations as your garden variety breast cancer so that makes it "easier" or should I say, "less hard" to study. Once they unravel and then understand mucinous breast cancer, they hope that it will make it easier to understand the more complex garden variety of breast cancers. Studying mucinous breast cancer vs. studying traditional breast cancers is like studying the Washington Monument in Washington DC vs. studying Antoni Gaudi's Sagrada Familia in Spain!
Now, regarding the DCIS question and mucinous breast cancer....DCIS is seen with many types of invasive breast cancer. One thing that I learned that I think many of us were confused about is how we could have had a Grade 2 or Grade 3 DCIS, but only a Grade 1 or Grade 2 mucinous breast cancer. DCIS is NOT graded the same way as invasive breast cancer. Now what do you know!!! DCIS "only" measures the nuclei, whereas invasive breast cancer measures the nuclei, tubules and mitosis. If you had DCIS accompanying your mucinous cancer, the DCIS grade would be the same as the nuclei Grade that was in your Scarff-Bloom-Richardson score. Who knew???!!! Now the reason why so many of us who have low grade mucinous breast cancer have DCIS is because our tumors are slow growing and the DCIS hasn't had enough time to become invasive and then turn aggressive. The researcher said you don't see as much DCIS with aggressive tumors. hmmm.....
Here is a study concerning salivary tumors which I think derives some of their conclusions from their study of mucinous breast cancer. The study includes some of the researchers that I met. Don't get nervous if you don't understand the abstract. I'm just trying to connect the dots....
http://www.ncbi.nlm.nih.gov/pubmed/22882517
....stay tuned for more......
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VR, thank you!! Staying tuned. And I'm in for helping the researchers in any way that they need!
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Fascinating! I had mucinous ovarian cancer.
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Wow, VR, thank you so much!!! This is really fascinating. And I'm so glad to know that there are scientists studying our specific type of cancer. Because it's hard to be so rare and out-of-the-box - it results in feeling pushed aside. Like mucinous breast cancer is so rare it's not really worth paying attention to. So I really love it that you're having such fruitful meetings with these researchers!
(I haven't posted here in a long time. I'm the one who had a stage 1 grade 2 mucinous tumor + DCIS, at age 30.)
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Raili... I haven't forgotten about you! I hope you are doing well! I want you and all of our mucinous sisters to know there are researchers doing SERIOUS research on our type of breast cancer!
Magic.... I am going to hold off for now telling everyone how we can help because I need to explain further details. Once I lay out everything, then everyone will understand what we can do to help. I greatly appreciate everyone's interest. We are going to rock the house at Sloan Kettering! I promise!0 -
VR - There are not enough words to thank you for meeting with the researchers and sharing what you learned. Count on me to "stay tuned".
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Today, I will discuss my observations of what I saw in the lab and explain a little bit about what they're doing.....
Entering the lab, I was introduced to some of the researchers who were huddled over a microscope. Yep...with all this talk about genetics, researchers are still glued to a microscope! They let me take a peek of lobular breast cancer cells. Hmmm....Didn't I say this was a research lab devoted to "rare" breast cancers.....Why would they be looking at lobular breast cancer cells? Because these lobular cells were VERY AGGRESSIVE. Traditionally, lobular breast cancer is a slow growing cancer. They are trying to unravel the mystery of what makes these cells aggressive. Does that ring a bell with anyone? Mucinous breast cancer is USUALLY a slow growing, highly ER+ breast cancer. But on this thread, we have several sisters who have aggressive pure mucinous breast cancers. I showed the researchers our sisters with HER 2 + mucinous breast cancers. They were aware of that unique presentation. Rarest of rare! So, I hope all of you can appreciate that these researchers are studying the "outliers" of ALL types of breast cancer. None of you are being forgotten. I hope all of you are beginning to understand how the "outliers" may hold the key to understanding breast cancer that might one day lead to prevention and/or cure.
Regarding Golden's HYPER variant of mucinous breast cancer, the researcher showed me how they "classify" the various pure mucinous breast cancers. She showed me pictures of how a "traditional" pure mucinous breast cancer looked under a microscope. Very few cancer cells swirling around the mucin. The "hyper" variant had many cancer cells swirling around the mucin. Our researcher said that these different variations were identified back in the 1980's using a microscope. Now, with genetic testing, such as the OncotypeDX test, the aggressiveness of these variations can be confirmed. That's why Golden had the higher OncotypeDX score of 27. Recall that for pure mucinous breast cancer, the average score is a 15.
Next, I was introduced to a lovely French oncologist who is spending a year in the lab studying metastatic breast cancer. What is so rare about metastatic breast cancer? Well, according to this clinician/researcher, "only" approximately 10% of patients are diagnosed with Stage IV right out of the gate. That is considered "rare." While approximately 30% of lower staged patients may face metastatic breast cancer at a later date, those 10% who present at Stage IV are also being studied and may unlock the mystery of aggressive disease. On another post, I'm going to come back to his research and how we can all help him. I don't want to get ahead of myself here...so please be patient.
Next, I was shown their freezers. Having previously visited the researchers' lab who study the DH's rare family of disorders, I know how important freezers are. They contain the specimens that ALL the important research is based on. If ANYTHING happens to those freezers, years and/or decades of research can ultimately go down the drain! The researchers are very proud of their specimens. Before creating the lab, our researcher was given coveted specimens that date back thirty years. She brought them with her to Sloan Kettering. She also explained how she was gifted hundreds of more specimens by a Sloan Kettering breast surgeon who had the foresight to collect Flash Fresh Frozen specimens over the years..... Now, I want all of you to remember what I just said...FLASH FRESH FROZEN....because that's going to come into how we are going to help.......
Flash Fresh Frozen specimens are the hardest to make, transfer and keep. They are necessary to study cancer cells on the genetic level. Here's what Eric Topol, MD, a medical visionary, has to say about the future of cancer research and Flash Fresh Frozen specimens:
Topol on the Cancer Clinic of the Future
Hello. I'm Dr. Eric Topol, director of the Scripps Translational Science Institute and Editor-in-Chief of Medscape. In this series, The Creative Destruction of Medicine, named for the book I wrote, I am trying to zoom in on critical aspects of how the digital world can create better healthcare.
Cancer care is rapidly changing, if we think about where it was some years ago as it was really beautifully archived in a book by Sid Mukherjee, MD, The Emperor of All Maladies,[1] and to where we can go in the future. Just launched recently, for example, was MD Anderson Cancer Center's Moon Shots program in cancer care.[2] The Moon Shots program is perhaps, because of genomics, digitizing the genome of the tumor, comparing it with the genome-native germ line. This gives us an opportunity we never had before.
So what is the cancer clinic of the future going to look like, because it's just starting to get developed today? For example, when we have an individual presenting for a new diagnosis of cancer, we have to move away from fine-needle aspiration and minimal tissue; we need real tissue to be able to process it properly. Not only do we need the formalin-fixed paraffin-embedded (FFPE) specimen, but we also need another type of FF -- that is, flash-frozen specimens so that we can then whole-genome sequence this tissue.
Now, when that is done at the primary diagnosis and done within hours and analyzed with the appropriate software algorithms, we could get the driver mutations nailed within 24 hours from the diagnosis. This can set up remarkably precise therapy that can be given to the patient on the basis of that individual's tumor. There are no 2 different cancers that are the same anywhere. Just like there are no 2 individuals who have the same DNA, that's the same for a tumor.
One of the issues that we have to confront is that there's a lot of intratumor heterogeneity. We need multiple samples to sequence from the tumor, and if there's already a metastatic lesion, we need a sample of that as well. Multiple sequencing, frozen tissue, genome-driven guided therapy -- right from the get-go -- is what we need. That's not what we have today, but that's where we can go in the future of cancer genomic medicine. It's really an exciting opportunity. It has to be validated.
The cancer drugs that are used today are remarkably expensive, and what's fascinating is to see -- and this is a recurrent theme -- is that a drug being used, for example, for renal carcinoma can also be used for leukemia. There was a classic 3-part article on the front page of the New York Times [3] that exemplified some of the stories along those lines.
It's a story about mutations -- a war on mutations, not a war on cancer -- and this type of cancer clinic in the future can take us there but there's going to have to be a whole different look with respect to the way that we take samples of the tumor. We need much more tissue, and to use frozen tissue so that we don't have to bootstrap the FFPE (that paraffin-embedded specimen) and only get a couple of hundred genes or coding elements, but in fact get a whole genome from the flash-frozen specimen. That's really important, and we have to move in that direction -- get more tissue in order to account for the heterogeneity that we know exists. And we have to do deep sequencing of that frozen tissue in order to get the driver mutations identified, and also be able to anticipate where relapses can occur downstream.
That is precision therapy. This exemplifies the future of cancer genomic medicine, and it will be really interesting to see how that plays out in these cancer clinics of the future.
Thanks so much for joining us for this segment, and stay tuned for more from The Creative Destruction of Medicine series.
References
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Mukherjee S. The Emperor of All Maladies: A Biography of Cancer. New York: Scribner; 2010. The 2011 Pulitzer Prize Winners: General Nonfiction. http://www.pulitzer.org/works/2011-General-Nonfiction. Accessed March 5, 2013.
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University of Texas MD Anderson Center. Moon Shots program. http://cancermoonshots.org/. Accessed March 5, 2013.
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Kolata G. In treatment for leukemia, glimpses of the future. New York Times. July 7, 2012. http://www.nytimes.com/2012/07/08/health/in-gene-sequencing-treatment-for-leukemia-glimpses-of-the-future.html?pagewanted=all&_r=0. Accessed March 5, 2013.
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Here's a video of Dr. Topol. And I highly recommend reading his amazing book, The Creative Destruction of Medicine.
http://www.medscape.com/viewarticle/780424
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That's all for now. Stay tuned.....
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Great to hear your trip went so well, I have bookmarked the thread now so I don't lose it again!
This thing about mucinous cancer normally being aggressive when it develops elsewhere in the body but damped down (usually) when it arises in the breast, I wonder if that's like how various mechanisms in the placenta work to protect an unborn baby from most of the bad things in mother's system; or if there's some differences in the immunity system as it operates locally in the breast, in order to protect mother from baby-mouth germs tracking back up the milk ducts, (I think that's the cause of breast abscesses in feeding mothers?) which might also modify the cancer? Just a thought.
I'm fascinated to learn more about what they are doing, can't wait to hear more of you feedback
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Hi everyone, especially VR, thanks for your superb work, when can we get you a research grant?? Its great to read all this exciting research. When my life slows down I will start getting my head around some of the information. I am still supporting my dear friend Julie, and her family. At 39 she is in the very last stages of ovarian cancer and has already outlived all the expectations of her specialists who were very sure she would die in March. I do keep praying for you all from my list beside my computer maybe a couple of the new joiners i haven't got on my list yet, but I will rectify that once life slows up.
Fascinating to realise the information about mucinous cancers elsewhere being more aggressive. The mucinous bowel cancer that I had in 2001 was aggressive, however I was blessed in that it was diagnosed while still in the polyp and it had not spread into the bowel wall, my diagnosis and operation were very timely and following the colostomy (due to the position of the cancer) I have had no further problems. I will have to get all the pathology results out and check all that information.
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Enjoyed your second installment so very much! Can picture what my cancer looks like with your vivid description of what you you saw on the slides. Thank you so much!
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hymil...regarding your question regarding the small pools of mucus...the researchers didn't think much of it. They said that the lymph glands secrete all kinds of fluids and that the pathologist may just have been descriptive in what they saw. Perhaps you might ask to speak to the pathologist and ask them to explain further their report....
which brings me to another point....the researcher told me that if you put 5 pathologists in a room, you will get 5 opinions WITH some variation. Ever see on this discussion board some people having their tumors up or down graded? That's why genetics offers more precision. However, keep in mind, tumors are NOT homogeneous...so depending on what spot is being examined...there MAY be some differences....
Another thing that we discussed was....(and this was a point that I was VERY aware of)....try NOT to have labs done on a FRIDAY. Depending on the time of day that the lab was drawn, the specimen might not be examined until the following week and the specimen might degrade. Furthermore, by Friday afternoon, after looking at many specimens over the course of a week...well, you all know where I'm going with this one.....The DH's physician's best advice and our Sloan Kettering researchers agree....schedule procedures and labs at the beginning of the week....and early in the day....
I'm not going to have time today to go into further details about our meeting...still need to do some more digging before I can further explain some topics...Glad you all find the mucinous carcinoma organ research interesting....
But I will leave you with a chuckle....I showed the researchers the Japanese study about neoadjuvant chemotherapy not shrinking mucinous tumors....but...still....the mucinous patients had good outcomes. They had missed that study and were interested in reading it. So we went to pubmed and they downloaded the complete journal article. They were impressed with my research abilities. I then told them that I don't do facebook...but would rather spend whatever down time I had searching journal articles on pubmed. They all laughed! Then one of the researchers looked at me and said that that was what they all did too!
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Okay....I have to tell you some more information regarding our meeting because The New York Times just published an article about genetics that speaks to what I've been trying to discuss in installments. The article is regarding a LANDMARK cancer study that was published yesterday. Please read the article, DNA Studies Lend Weight to New Way of Looking at Cancer. Before reading it, please note that some of the points made in the article, I discuss in my previous posts. Please read the article and then jump to below the link and read what I additionally found out about mucinous breast cancer.
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See how many similarities there are in the article and in what I posted.
Recall that I mentioned that the researchers were trying to find out on the genetic level, why, mucinous cancer in the breast is less aggressive than when it appears in other organs. Recall how I said that specimens, specifically flash fresh frozen ones were coveted. Recall that I said that if you got several pathologists together you would get different opinions....
Now, I want you to note the following paragraph in The NY Times article:
"Another finding was that many endometrial cancers had a mutation in a gene that had been seen before only in colon cancers. The mutation disables a system for repairing DNA damage, resulting in 100 times more mutations than typically occur in cancer cells.
“That was a complete surprise,” Dr. Levine said.
It turned out to be good news. Endometrial cancers with the mutation had better outcomes, perhaps because the accumulating DNA damage is devastating to cancer cells."
What the researchers told me from looking at the genetics of mucinous breast cancers, they found what they think is a mutation in an area that fused some genetic material and believe that it may explain why mucinous breast cancer will usually become not aggressive. They did NOT see this genetic characteristic in other types of mucinous cancers. So....you see....there are genetic mutations that are occuring that are good "surprises." Why it is occuring in the breast and not in the other organs, they still can't explain.....
But I think you can all understand now how important studying the genomics of tumors is so important......
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Okay....now I will suggest how everyone can help. If you read the NY Times article, you will note that the Sloan Kettering doctors scoured the country looking for specimens. That is where I was going! Our lovely French researcher/clinician was looking for "virgin" (my word) Stage IV FRESH FROZEN specimens. That is, he needs to have as many specimens of tumors from patients recently diagnosed with Stage IV breast cancer who have NOT received any type of treatment. Since only 10% of patients are diagnosed with Stage IV right out of the gate, there is a dearth of specimens.
Likewise, when it comes to rare presentations....such as mucinous breast cancer, such as mucinous breast cancer that is HER 2 positive....such as lobular breast cancer that is aggressive....these researchers NEED THOSE SPECIMENS!!!!!
What I need from all of you is to speak to your teams! Tell your breast surgeons and tell everyone that you know that when someone is diagnosed with the rarest forms of breast cancer, THEY NEED TO ACT! They need to pick up the phone and call Sloan Kettering and get those tumor cells FLASH FROZEN AND SENT IMMEDIATELY TO THE RARE TUMOR LAB!
We have to shout it from the roof tops that the present way of collecting specimens is obsolete! We need to invest in equipment to preserve these important specimens so researchers can do their work!
Got it? We need to get on the horn with all of the major cancer groups and tell them that the status quo is NOT working. They need to be pro-active in getting the message out there. Rare breast cancers might hold the key to understanding garden variety breast cancers that may one day lead to a cure.
Thanks for your help!
Now let's begin!
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VR, I support your goal for fresh-frozen virgin specimens. I agree that the technology using fresh-frozen specimens seems to be more precise.
But given that fresh-frozen non-treatment-exposed tissue is key for more precise mRNA cancer characteristics, and assuming that information is well-known to specialists such as oncologists and breast cancer surgeons, why are they not independently focused on collecting fresh-frozen specimens for every breast cancer patient as a common practice?
A.A.
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Way, way, way too expensive to collect and store. The DH's physician/researchers in Texas lost specimens due to an electrical malfunction. Set them back YEARS!
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VR,
So in essence what you are advocating (roughly speaking) is that the non-treatment-exposed fresh frozen samples be collected for primarily the rare types of bc, to try to get those types "solved" for treatment, in part because fewer samples would be needed (less expensive)?
I'm not disagreeing, but rather trying to understand the rationale, given that fresh-frozen samples are so spendy to obtain and maintain.
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Yes and No. It seems they are easier to understand on a genetic level...and hopefully they could take what they learn from the rare cancers to look for clues in the genetics of garden variety types of IDCs. Recall what I said about looking at the Washington Monument rather than Antonin Gaudi's cathedral! Hopefully by understanding the genetic FOUNDATION of rare breast cancers will lead to a link in understanding the more common breast cancers.
Regarding Stage IV breast cancer, they need specimens that haven't been altered by adjuvant treatment...
The bottom line is even though rare breast cancers are rare, there's still a great deal of them. Thousands. And it's expensive to store them.
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The core of the importance to VR and I about all this is that as two cancer patients it is quite frustrating to discover only AFTER your own tissue was taken out and stored by less useful methods, that the more useful methods can't be used on our tissues. Equally disappointing is that as well, once any cancer treatment has been started (such as neoadjuvant), we can't be the ones to provide useful tissue samples.
Soooo.... the long and short of it is.... if more people TALK about it enough that the providers and the newly diagnosed can be aware of the importance of this, the better it is for EVERYONE, due to any resulting research.
A.A.
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Yes.
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Varocious - you are indeed a varocious researcher! You are the best! I appreciate the research you do, and that you take the time to simplify it for our beneift. Thank you!
Here is my question. Are those of us with mucinous carcinoma in the breast more likely to have a mucinous cancer in other organs?
Jenny
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Happy...No!
And....the researchers just extended an invitation for next year...when they have more information to share! They welcome our questions!
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Feelingthemagic, I don't know if I ever replied to you. Sorry if I haven't before.
According to my reports, my cancer was mucinous. My hair is growing back, too, and it's soft as a baby's :-)
I hope you are doing well.
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VoraciousReader, I've been reading over recent posts.... What you learned and have shared is simply fascinating!
Here's an update on my situation: I just finished chemotherapy 2 weeks ago, so I'm very happy about that!! I first had A/C, and I got through it very well... lost my hair, but had mild side effects, otherwise. Then, on Taxol, my hair started growing back. My oncologist was very surprised. Before I had even finished the Taxol I had a thicker, albeit short head of hair. Oddly enough, I had more side effects on Taxol than A/C, although they still weren't horribly bad. I'm still dealing with diarrhea and loose stools from the chemo, and I have mild neuropathy in my feet.
I was told that Decadron, the steroid which was used with the Taxol, could raise blood sugar, and I believe that. I was straddling the fence of diabetes before I started chemo, and it seems to have pushed me right over. I will see my primary care physician next week and see what he suggests. I had 2 high blood sugar readings this week, both fasting. One was 170, and the other one was 273. Both fasts were for medical procedures. I had a PET/CT scan on Tuesday and had my port removed Wednesday. Tomorrow, I have a meeting with the radiation team. I'll probably start radiation in a month, and I'm to start Tamoxifen in another week.
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