Calling all TNs
Comments
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After reading pppinaz' post I wonder how many of us had/have FCBD. That was why my Gyno had me start mammos in my early 30s.
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I don't think I had/have FCBD because I've never had any lumps or anything before all this bc mess. My mammogram was ordered as a first baseline "for the file."
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I had FCBD. Mine were so bad that my Internist sent me to the Breast Center for annual checks by my BS. That was in 96, I hit that brick wall in 08.
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Okay, so I'm posting probably to just get some reassurance that I'm not high maintenance! I just called to schedule an appt. to meet with my onc because of a lump I felt under my lumpectomy incision (had one in April)....I'm pretty sure it's just scar tissue, and feel stupid because I just met with him 2 weeks ago and it didn't come up. I'm done with radiation (and all treatments!) in 3 days and really just want to start off with no lingering worries...they're squeezing me in on Monday after radiation to have him feel it...I really just want a baseline of what it should feel like. Is this being too needy?
Oh, I was wondering if anyone else suffered with hemmorhoids during chemo? Mine were HORRIBLE and one of my worst SE's. My nurse said it probably didn't have much to do with chemo, other than a change in bowel movements (from constipation to diarhhea)...funnily enough they completely went away when I was done with chemo.
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Mtnmom you are soo right to go get checked! Don't feel needy!! I felt a lump under my arm a few weeks after my bilateral mastectomy and called my bs after a few days of being worried and they got me right in and ultrasounded it to find out it was a skin irritation. So don't ever feel weird about getting something checked out. We all need to be very viligent with that stuff!! Hemmorhoids, I feel ya there also!!! Going to the bathroom has been rough since I started chemo, I have been taking stool sofeners to help however not helping much. I hate to take a laxative, I only did that one other time in my life and it wasn't a good result!!!!
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I don't think you are being high maintenance at all. I had a pain attributed to scar tissue, and had it checked with ultrasound, too. I had a fluid buildup, no mass, and pain where one of the clips is located. Get checked, feel reassured. Don't hesitate to speak up and expect your med group to listen. I think that's a lesson learned from the gals on this site.
Chemo messed with my intestinal system, but it has calmed down. OTC's helped.
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I've always had lumpy, cystic breasts. Well, as long as I've had breasts, anyway! I've also always had a lower 'normal' body temp - 97 to 97.5, usually. Until I found these forums, I had no idea these were associated with TNBC.
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riley - interesting....my body temp is usually lower than 98.7 myself. I didn't realie there was a connection to TNBC. Was there an article or something you saw about this?
Sherri
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Titan - thank you - the appt is July 13th, but I think it'll be okay I'm not too worried, but then again I wasn't in the least bit concerned when they told me I needed I biopsy - I thought it was a cyst. To be honest, I'm really worried about my left eye right now. It feels like something is there, but there is nothing there, it hurts and giving me headaches. I also noticed I have 5 black spots on the white of my eye evenly placed around the color part. Weird....... That appt is Tuesday.
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Sherri,
It was a comment on this site. I'm looking for it and when I find it, I'll edit.
ETA: My bad, I misremembered the quote (this thread on the previous page)
"Yes, our blood is thicker, our body temp is lower, our Vit D is out of whack--these are all signs of having cancer."
I conflated that with this being a TN thread. My apologies for the confusion.
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My body temp "normal" has always been under 98.6 as well.
Riley, I also have had lumps since they day my breasts started to develop. I was sure that I had breast cancer from the start. I lived with that fear for months! I was too scared or embarrassed to mention it to my mom. Somewhere around her I read about a young girl, 11 years old dx'd with TN. She has also been on the news, with the message to tell your mom if you think something is wrong. She is the youngest BC survivor known.
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The thread is Please pray for our TN baby sister, I think.
Mtnmom, I had Hemorrhoids from pregnancy, and during chemo they came back. I have NEVER been so constipated, and my health care team had warned me that chemo can cause it. I kept prunes in the fridge to eat, but it didn't help. I think I finally used milk of magnesia.
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MtnMom - I had trouble too........I know it was caused from constipation to diarreha. I started taking probiotics daily and stool softners two days before chemo and for days afterwards. I still had the problems, just not as bad.
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Oh yeah..along with the constipation/diarhhea fun there was also the flatulence! Yikes! Talk about embarrassing.
I think chemo really messes with your digestive system..it sure did with mine!
My body temp is also lower than "normal"....I guess we are just special aren't we.
My blood however, is very thin....it may be from the daily aspirin I have taken for several years though due to my dad having heart issues when he was 68..he had a heart bypass and he is perfectly fine now..at 78!
Mtnmom..let us know how your appt. goes..it is good to have things checked out. for your peace of mind....
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Too many posts I can't seem to catch up. I found a great product for the constipation while undergoing chemo: Mag07 which uses oxygen to clear out the chemo and prevent the constipation. I started using it during my second time with chemo and it was the only thing that helped! And yes, hemroids caused by chemo no matter what I did. Horrible gas too.
My temp was low until they took the cancer out, my blood was too thick and my vit D was low. Pamelajo posted this a few pages back and it is true with all women with cancer, I believe, not just TN's.
I have incredibly dense breasts--only an ultrasound or MRI would be able to show cancer--the mamos don't work with me. Those of you with FCBD should check out the site breastcancerchoices.org and look into the Iodine Protocol to help reduce chances of recurrence. Lots of great info on there, although I don't completely agree with everything, it is empowering the things that we can do for ourselves.
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Okay, well, my body temp may be a bit low, but my blood is thin and I had my vitamin D levels checked, which came back in the optimal range at 79. This is why I believe in clinical trials, because anecdotal evidence can lead you into second-guessing everything. And besides, correlations are not the same as causes.
I'd be interested in any research studies that show these links - can anyone provide? Thanks in advance.
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Only study I have about thick blood is 22 years of being a cancer patient LOL But, I've heard from several of my doctors that people with any form of cancer have thick blood. My blood will clot sometimes before they can walk it to the lab for testing. Even with anti coags in the tube. My body temp stays around 97 at all times. Has been that way since I was a kid. Again, 22 yrs of being a cancer patient.
Dunno bout my Vit D levels. I do know that I took extra D for awhile at the suggestion of my Onc. We quickly noticed signs I was getting too much, so he told me to stop.
Just a lil FYI.
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luah: Now that I am cancer free, my boby temp has gone back closer to normal (everyone's varies a little) and my blood is no longer thick. Just when I still had cancer in my body. It's a good sign. I found out about the blood and the body temp from an observation realyed to me by my primary care dr. The vitamin D was provided to me by him also. You are right 79 is optimum--it should be at or around 80. Mine was 40 when diagnosed and I have heard of much lower numbers from other women.
Pamelajo: Curious that you have always had the thick blood and lower body temp. Do you take garlic or vit e or any other supplements to help with thinning? I know that you do other things as well, just curious.
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Any Triple Negative survivors from central Connecticut? I'd love to hear from you.
As for follow up treatment - my BS said I would be having an MRI once a year - I'd see her every 6 months and my oncologist every 6 months.
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MBJ: I don't take garlic supplements, but we eat a ton of it. Vitamin E is in almost all my other supplements in one way or another. My Dr and I are discussing an asprin regimine after treatment is finished.
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mtnmom - definitely get anything checked out that you find suspicious! I did and it ended up being a new primary cancer. I doubt yours is anything (and I don't mean to scare you). Just a reminder that you are not being needy and your doctor would want you checked for sure!
My body temp has always been pretty normal and I don't know if my blood is thick or not (never asked).
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Hi, this will probably sound like a stupid question but how would I know if my blood is thick or thin? My doctors have never mentioned this to me. I just had full bloodwork done through my GP, including cholesteral, glucose, etc., etc., and I've never been told anything about the "thickness" of my blood.
Sherri
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I've always been a stellar bleeder, but...
I have always had a low core body temp...97.0-97.5, a temp of 99.5 feels like a full on fever to me. My vitamin D started at 4, camp up to 16 after 2 months of treatment...this is ongoing.
that's all I know
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Sherri, I heard that the darker your blood is, the thicker it is, I don't think clotting ability is always a sign of thick blood. But that is just my hear-say, does anyone know the answer for sure?
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This talk of thick blood -- are you getting a viscosity check? How? Or is "thickness" referring to the number of white or red blood cells? Clotting times can be measured, I know from having had that done for my dogs, but I've never had a doc measure mine that I know of. And as Luah mentioned, is this anecdotal, or is there some research to reference?
Body temps go up and down all day.
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I never thought to ask these questions. From what I can remember during chemo, when they took my temp it was always right at "normal" or slightly below and sometimes when I think I'm sick take my temp and I'm not it's usually the same. As for "thick" blood, what does that mean? It's something I don't think I every thought about.
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This is a very interesting discussion!
Luah..a 79 Vit D level? Awesome...how much d3 do you take...I started at around 51..up to 63 at last check..hoping I'm at around 74 or so next check...I take 5000 IU's per day..plus getting as much sun as I can this summer..no lotion...I like having a tan since last summer was not conducive to much of anything..going through treatment!!
MJB..I also have very dense breast...I'm hoping that they will turn to fat soon since I'm now through menopause..I always thought that dense breasts was a good thing! Obviously it is not..
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Sugar: There aren't any stupid questions when it comes to cancer! I was just told this by my dr. when I was getting an IV.
Kittycat: How are you doing? I hope you are holding up okay during chemo. My temp stayed at around 95-96 the entire time before my MX. Now everytime I have my blood checked I ask if it's still thick (I am told it isn't anymore) and I always ask about my temp. My temp varies as everyone's does at different times of the day but now it's much closer to the norm-98 something or in the high 97's.
PamelaJo: I hear aspirin is great for BC! We eat tons of garlic, too. Enough to scare all the vampires away in all of Los Angeles.
My own question: I was plagued by uterine fibroids for 22 years prior to getting cancer. I had awful, heavy, painful periods and 12 years ago had to have a myometcomy for them. I have another BC friend who had similar problems. Anyone else here have issues with fibroids or problematic periods?
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MBJ and all others..... I have been too lazy (tired?) to post, but had to comment on the period thing. YES!!!!! Crazy! Chemopause twice, started hemmorraging in April, D&C in May, (removed a b9 polyp) and now another crazy period. My Gyn tells me it is not perimenopause, that my bleeding seems to be off the charts (many standard deviations from norm).This was not the case with me pre cancer. But we can't have hormonal treatment (I also had a ER+/PR+ tumor). My last period was so painful that I thought I was losing it, and I have had 2 completely natural births. Luckily, she is very empathic, as is my onc. (I guess that helps?)
I just had my very first "Staging" MRI (I went through the chemo...TC with a different hospital). After all of this uterine drama, I kind of demanded it, and luckily my lungs, liver etc. came back clear.... I have a mass on an ovary, and will get it checked out ( had a trans vag pelvic ultrasound in April..... nothing). Onc wants me to have another. $500+ each time.....does anyone know if an ultrasound can be measured against an MRI?
I am just SO tired of the constant medical drama!
Oh, and as far as nausea and taxotere goes.... I had Emend, as well as Zofran, dexamethasone and benadryl with the T drip, plus about 4 days post, and it was never a problem. If anything, the dex made me hungry!
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mbj,
I had severe endometriosis resulting in a total abdominal hysterectomy at age 35. We tried Lupron, had taken out the right ovary a few years before. So much pain for years, finally becoming constant. I had several burst endometriomas, went into shock, and my colon was fused to my uterous. After my hysterectomy, they also found fibroids after pathology.
along these lines, I am curious how many of us suffered auto-immune diseases or chronic illness prior to our diagnosis. I notice in my support group almost all of us have had significant health challenges like Lupus, thyroid disease, fibromyalgia...
I was wondering about starting a new thread if there is a a lot of "co-morbidity.."
traci
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