Team ILC Warriors
Comments
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joellelee - These are both very common and routine lab orders. CBC (complete blood count) and chemistry panel are about the most basic blood tests around. Yes, your family doctor can order these. The CBC tells about the white cells, red cells, hemoglobin, etc. And as someone above mentioned, the chem panel (or clinical chemistry as you wrote) is a comprehensive set of blood tests that evaluate liver and kidney function, electrolytes, etc.
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CBC and Chem panel are standard blood tests even for an annual physical without BC too.
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Sounds great...I was just wondering if this is something my onc should have ordered...but, if I can just ask my family doctor, then great...thanks so much for the help!
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Thanks Gslsal,
I understsand completely. I don't have any family history of breast or ovarian but have father who had colon, ahis unt with lung and a greatgrandmother who I am told had breast cancer.
I also will probably be a wreck waiting for test results and I certainly am not looking forward to rads for 4 weeks. I was told that there is no connection with ILC going into the good breast. But look how your good breast had LCIS, etc. this is what troubles me. I am hoping to speak to the BS tomorrow, missed her call today. She left a message saying "I hope you will have the radiation. Suppose she will convince me to do rads but I will ask her about all the people who find cancer in the good breast and if in fact MRI will show ILC.
I, like lily55, wonder why ILC is so difficult to find compared to IDC. It just seems to me that most people in this thread have MX with ILC. hope I'll be comfortable with a decision after speaking with the BS tomorrow or before rads begin! making these decisions are the hardest part of this whole darn thing it seems. Starting on aromasin tomorrow. Pray for easy SE!
thanks a bunch!
beachwalker54
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Hi, ladies. Glad to have you in my world. Having a rough time lately. Yearly MRI in two weeks and I'm a wreck. Wasn't this bad the last two years, don't know why I'm such a nut job this year though if I spend a second I can guess. Dad died a year ago after a rough battle w leukemia (practically lived at memorial sloan kettering w him for four mos) and I've got a lot of job stress (at a crossroad professionally and need to consider how to move forward...) Do any of you worry about worrying? How dumb is that? But can't help it...
Beachwalker55, I had no choice but to get a mx (uni) due to two tumors in distant quadrants. Wouldn't have been much breast left. Truthfully happy to avoid rads too if that was the case. My onc insists that risk to other breast is not a sure thing. I know a 30 year survivor of a unimx; never recurred in other breast. Advantages and disadvantages of unimx vs bmx. Holding onto rightie for the time being but admit to hating the screening.
Lily, I know that ILC is harder to detect but I've not heard that its harder to cure than IDC. Big difference.
Hugs, sgreenarch0 -
sgreenarch: Right there with you in the rough time dept. Your description about worrying AND worrying about worrying is perfect. Not dumb at all. Makes perfect sense. I'm so sorry you are going through such a stressful time.
I'm 2 weeks past my double mx and have hit some kind of wall. I was hanging in pretty well - handling all these appointments and bracing myself for chemo and radiation that docs initially thought I would not have to have.
But now it's all sinking in and I think I'm freaking out a bit. And a PET scan was ordered... if this stuff is somewhere else I'm seriously gonna lose it. Anybody else had a PET?
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Hi, Kaydeesmile (nice name.) I'm on another time zone, (7 hours ahead of east coast US) so I often feel that I can be of help to the ladies who can't sleep back in the US
I do know what you mean. I was relatively ok immediately after the mx, but then started lots of ups and downs. Must tell you that it's normal, not that that really helps too much. I did ask my GP for a xanax prescription and took a half of one each night for quite a while. Was ok during the day but nights were a challenge. Didn't use it during the day cause it made me groggy, but it was heaven for the night. Found I woke up relaxed, too.
The other thing that helped me tremendously during that first 6 mos was that I kept a journal. I was never the kind of person to do this, nor have I done it since, but I wrote down everything. Every feeling, - fear, anger, terror, frustration. Also relief. When I'd find some words of comfort in something I'd read, I'd copy it down. Some prayers were inspirational to me, but I realize that that's very individual. One day I even wrote a manifesto! Twelve points of what I was willing to do and not do, (ie, 'I won't listen believe every stupid movie or book narrative that shows everyone dying of cancer.' or 'I will choose my doctors carefully and then trust them, not second guess every word.' etc.) I would reread it often during that first year and it really helped me.
Re PET scan, I'm no fan of any scans as you can see from my calm (NOT) approach to my upcoming MRI, but the fact that they ordered it doesn't mean they're sure you've got something. Dif drs have dif philosophies re scans. My MO orders very few. I know of others that order many. Besides, if it shows nothing you'll feel relieved. If, hopefully not, but if it shows anything, hope is that it's caught early before.
Scans are xanax popping time for me, but then they're over, and you move on. Wishing you luck, calm.
sgreenarch
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Greenarch, cancer dx was also the first time in my life I resorted to xanax. Exactly like you, I would take half a pill at night. Otherwise, I woke at 3AM with a panic attack, and that was not exactly promoting any kind of healing. It only took a few times with the xanax to break the cycle.
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sgreenarch - thank you so much for your insight and advice. it helps to know somebody is out there during these sleepless nights.
momine - as always - when i see your avi i perk up. our DXs are similar and your suggestions are always sound. i always feel i'm learning from you.
thank you both.
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Kaydee its normal to ask for scans after a diagnosis......dont read anything in to it....be glad they are looking out for you....
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Kaydee, I had a PET scan at DX and another a year later. Expect to have one annually from here on out. They are not bad. You have to fast prior because they inject a glucose substance that they then track as it spreads through your system.
I make them give me a little Xanax because I get a bit claustrophobic, but otherwise they are a breeze.
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Thank you Kestrel! Good to know. Whew, glad it won't be painful.
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Hello ILCers,
I'm just checking in after a visit to a naturopathic doc. I'm looking for suggestions to try to fortify my body before chemo.
I was also ready doing supplements such as vitamin d, b12, c, omega3, coq10 and tumeric. But he also suggested some other things such as:
UltraClear plus PH "medical food" - which looks to me like a glorified protien powder.
Citrus Pectin ( I read where claireinez was also using this so I'm encouraged)
Wobenzym
Fermeted Cod Liver Capsules
And three kinds of mushroom extracts. (stamets 7, five ganoderma and mycosoft)
Anyone else have experience with the mushrooms? Still unsure if I will take those.
Kay
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Kay,
Where do you get the Citrus Pectin from and how much do you take.
Thanks,
Sharon
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Hi Sharon
it's the pectasol-c brand that you can get on Amazon. I take about 15 mg a day and I'll probably cut back to about 5 mg a day after treatment.0 -
OK, thank you so much. Do you have any side effects from it?
Sharon
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You're so welcome. No SEs so far...
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Hello All...
This is my first ever post...I am an ILC lady, too...I am a little over a year from my initial diagnosis and wanted to Thank You all so much for sharing your information, experiences, feelings, fears, frustrations (all of it) on this board...In the beginning, before I spoke fluent Breast Cancer, I would come to this site occasionally...I didn't always read the Posts, but found strength, even in your personal profiles. It meant a lot to me, during such a crazy dark time to not feel so alone on this journey~
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Memphishairdo-
Welcome, I am so touched that you found strength here. I dont know what I would have done without these women, still run here to read and post all the time. All the ups and downs, here we are all in it togethor our common bond is so strong. We all "get it", its a safe place. I hope you will continue to come and share with us.
So, I havent been posting here very much but I do read almost daily. I have been in a funk! 1 month post rads actually over a month. I am exhausted and cranky, no interest in anything. I feel a bit better today but the past couple weeks have been rough. Mentally mostly. I did start taking the tamoxifen but I abandoned on Sunday.. It as really upsetting my stomache and making me worse, not sure if its psychological or not. I do plan on taking it as I am not scared not to do it.. ugh.. all the decisions we have to make, I just want the BC Gods to come down and show me the way.
Much love to you all. Claire, Gail, Lily- I hope you 3 are well, you continue to inspire me.
xoxo
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Welcome Memphis! I hope you continue to find strength and peace here. I know I do.
Kim, sweet sister, hugs to you for your tami journey. I started taking mine before bed and have had no problems. I read awhile ago on a couple of the tamoxifen threads that taking it before bed seemed to help some of the women who had gastro issues. I decided to try it right off the bat. It's working. Knock wood.
I am bumming that the manufacturer of the tami I'm using has temporarily discontinued it. 😱 Mylan, in case anyone is curious. Next month, I think I'll try Watson as that is what CVS was originally going to give me. Such is life!
Hugs to all my sisters. 😊 ❤
Amy0 -
Hi Amy my partner in rads and tami! I am glad it is working out for you. My brand is TEVA, 90 day supply so I hope I can tolerate it. Not so good so far but I am not giving up this easily. I was surprised how cheap it was $15 for 90 days. Hope you continue to feel fine. Let me know if any SEs start lurking...
XOXO
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Hi everyone. I'm sitting here staring at a bottle of Letrozole, 90 tiny little pills, will they help, will the SE make life miserable, will the benefits out weigh the risk, all questions that keep rattling through my brain. The MO, agreed to give me a cancer vacation until 5/27 so there's a few more days before it's time to take them. The RO says to think long and hard before putting them in my body. So many decisions. Like Lemon said, it would be great if the BC God would just show us the way.
Hugs for everyone.0 -
Oh, great! So the RO and the MO are not on the same page here. I hate when docs do that.
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Stage 1 grade 1...... Not that aggressive or invasive......you could investigate other things like I3C if you are unsure of letrozole or other AIs
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Amy, I'm on the Watson brand and am doing ok so far. Seems like it's one of the better tolerated brands. Hope you have an uneventful transition!
Lemon, maybe you could try a different brand? Everyone tolerates the brands differently, but it seems I've seen a number of complaints associated with Teva (yet others prefer it). It's a shell game! Hope you feel better soon.0 -
Kim, try taking it at night. I think you'll see a difference. Positive thinking. Right?! ☺ xoxoxo
Thanks, Gemini. 😃 I hope I have an uneventful transition as well. Unfortunately, I have 25 more days on Mylan. I just started tami last Friday. Glad to hear all is well for you on Watson. gives me hope! Hugs!0 -
gram, I will be switching over to Femara at the end of the month, too. A bit nervous, as my SE's with tamox have been annoying, but tolerable. Hoping the new meds will be better......or at least not worse.
On a lighter note, one of my clients is racing in Hawaii in a couple of weeks and she has decided she needs her coach along. WooHoo!! I'm not complaining about a "working holiday" in Kona the week before my next surgery. Guess who'll be the one showing up for exchange all tanned and relaxed?
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Dear Gail, does the coach need a suitcase shlepper?:) I volunteer! Nice that you get to go, enjoy.
I recently switched from tam to Femara. Some shifts in annoying SEs. Some better some more annoying, but overall completely manageable. I sleep much better, that's a nice thing!
Enjoy, shari0 -
Hi,
I feel a sense of relief having found this board. I had ILC with three nodes involved last year, lumpectomy, BMX, had six months of CMF chemo with rads sandwiched in the middle. Now on Tamoxifen and awaiting DIEP in July. I can't believe I've had TE's for 14 months already! Anyway, it's good to have found others who have had to deal with this sneaky beast. Oh, and I have lymphedema in BOTH arms. But I feel good and happy to be alive.0 -
Dear ladies,
Hi-I haven't been here in a while and I missed my ILC family! Not sure where to start; I'm just checking in. I'm taking the citrus pectin reluctantly not because I don't have faith in it, but I can't figure out how to take it so that I don't gag.I've been mixing in a bit of warm water and just slugging it down, but it's pretty awful. Someone said put it in tea, but I don't want to ruin my morning tea, which I enjoy.
I just returned yesterday from a 9 mile hike--hubby and I hiked into the Grand Canyon 4.5 miles and then out again, total elevation loss and gain (it's an "inside-out hike--you do the down part first and hike out the up part when you are already tired...strenuous) about 3000 feet. I am so sore I walk like an old cowboy! But I still like to challenge my body and mind this way. It makes me feel like I'm thanking the universe that I'm still here, and it makes me feel defiant towards cancer, both.
Xanax is the wonder drug for me when I have to have periodic scans, MRIs, sometimes even MO visits. I have an RX for .25 mg and I take a half of that most of the time unless I'm really stressing, so I am a fan of the occasional use. My surgeon, who shared my original pathology report with me, wrote me an RX when I asked him for it that day and didn't even blink. He said it was "good stuff"
.Question: I'm wondering if any of you have gained weight on tamoxifen. Specifically in your stomach. I have noticed a bit of a "belly", and I've been taking tamoxifen for a year now. Could it simply be menopause? I've always had a flat stomach with good abs...I've haven't gained weight specifically, but there seems to be more of it around my waist now, and looking down I see this bit of belly I didn't have before. No changes in eating habits--I'm about 95% vegan with very little grain eaten, and I'm extremely physically athletic most weeks....I'm bummed.
I go on femara in less than a year. What's that been like for those of you taking it?
hugs, ladies,
Claire
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