Team ILC Warriors
Comments
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Amen, Amy! While I wouldn't wish to be on these drugs......I do think the benefit far outweighs the relatively minor SE's.
Saw my beloved RO today and talked over options. She said pass on pulling out all the girly parts because that in itself sets up potential problems. Also said not to worry about taking. 5mg of Ativan to sleep at night. I may become dependant, but in the big scheme it's the lesser of many evils.
She said a glass of wine is no biggie and that my fatigue is probably more a function of the lymphoma than the tamoxifen. She did say that most 55 y/o women in my situation are not still swimming, biking and running and if that means I need 10 hours of sleep a night AND a nap most days, it's well worth it.
There's a reason I love her!
G'night all!0 -
Amen, Amy! While I wouldn't wish to be on these drugs......I do think the benefit far outweighs the relatively minor SE's.
Saw my beloved RO today and talked over options. She said pass on pulling out all the girly parts because that in itself sets up potential problems. Also said not to worry about taking. 5mg of Ativan to sleep at night. I may become dependant, but in the big scheme it's the lesser of many evils.
She said a glass of wine is no biggie and that my fatigue is probably more a function of the lymphoma than the tamoxifen. She did say that most 55 y/o women in my situation are not still swimming, biking and running and if that means I need 10 hours of sleep a night AND a nap most days, it's well worth it.
There's a reason I love her!
G'night all!0 -
"She did say that most 55 y/o women in my situation are not still swimming, biking and running and if that means I need 10 hours of sleep a night AND a nap most days, it's well worth it."
Very good point.
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^^ amen to that! That's not just sleep, it's battery recharging! ;-)
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Kestrulgurl,you are my hero! You're fierce, girl!
I got the all clear for my breast MRI. Sigh...Doing a quiet happy-dance in my head. And the glass of wine at my daughter's 31 year old b.d. party tonight is going to taste really, really good...
Amy, don't worry. My RO told me to avoid taking Vit D, C and E during tx--meaning concentrated large amounts. I'm sure you are perfectly okay with what you've done.
Thanks to all of you who sent positive energy and good wishes...love you!
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Yay Claire! Happy dancing with you!!!!! I think I'd have two glasses of wine tonight. ;-) Happy birthday to your daughter! You are going to have a fantastic day. I can feel it! :-)
I talked with my RO this morning and she said don't stop the multivitamin. She, like your RO, said avoid mega doses. She said I looked great, too. My boob, that is.
She said I have 4 more full breast txs and then 7 boosts and that my skin will start looking better during the boosts. Yay me!
Hugs to all my ILC sisters! I hope everyone has a great day. (((x)))
Amy0 -
Claire, so glad to hear you got the all clear. I would have been really surprised if it wasn't, but I have still been anxiously checking this thread since you posted that you had not yet heard the results.
Amy, glad to hear you're in the home stretch. Once I entered the boost phase, my badly affected skin (in my case it was my armpit and sup clav) quickly improved. I am now 2.5 weeks post rads, and the tan has almost completely faded. What's interesting is the rads seem to have "healed" the incision scars (both from the LX and the SNB) -- they're pretty faint now. Hope it's smooth sailing for you from here on!
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Claire, so happy you got the good results!! WooHoo!
Funny.....quite a few years ago (way before cancer) my son once described me and a fellow tri friend as "fierce". Your comment made me laugh remembering.
I am working diligently at reducing the fierceness and developing a more balanced approach, but it has served me well in the past.
Gemini, I found the visual damage from rads went away quickly, but the internal scarring seems pretty determined to stick around. Grrr!0 -
Yaay claire.....so pleased for you
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Claire, whew!! Thats wonderful news, so glad to hear it!!
Have one for you and one for us! We love you Claire!
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Kestrelgurl, I shouldn't complain because it hasn't been too rough for me, all things considered -- but regarding the lingering internal effects of rads, I can't imagine when or if my lumpectomied and radiated breast is ever going to feel normal. It's still a combination of sore and numb, and the incision site is thick and hard. <-- sorry, that sounds a little dirty
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Kestrel, I have the opposite. I have a large burn on my back that seems permanent, but according to the CT, I escaped internal scarring.
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How can we know if we have any scarring from rads? My RO didn't mention anything about it (that I can recall). When I met with my MO last week, she said my breast still has a lot of edema from the rads. The ridge at the LX incision site feels like scar tissue, but I never attributed it to rads -- could it be? [edited for clarity]
Thanks for the info.0 -
Momine, I actually had a large burn on my back, too. Was pretty freaked out by the realization the the radiation was "cooking" me all the way through.
Gemini, no one really talked to me about post-rad scarring, but now that I am months out the difference between the radiated side and the plan old MX side is night and day. It just feels tight and hurts to stretch. Like the skin, muscle and fascia are stuck together......which I guess is pretty accurate.
I am very active and even with daily stretching I notice a huge difference. My left side, even with TE feels pretty normal, my right (radiated) feels like beef jerky under the skin. I have more muscle spasms, tightness and general pain, along with diminished flexibility, on that side.
I am beginning to think that chemo may have been tougher in the short term, but easier in the long term.
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Kestrel, I have not had any recon, so that may be why I don't notice the rad damage as much. The rads side is tighter etc, but not to the point that it is bothersome most of the time.
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Momine, although the recon has made things flare up, my rads side was a problem even when I went flat for over a year.
Now, as I said, I am pretty active and "ask" a lot of my body, so maybe that made it more problematic.
On a fun note, my 27 y/o daughter is doing her first body building competition today. She has worked her butt off, literally, and looks amazing. So proud of her! Expect to see pictures! She may freeze in a bikini in northern Michigan, but she's going for it! She inspires me!0 -
Good morning ILCrs: Thank you for all your congrats!
I promised I would share what my naturopathic oncologist said, so here goes: he drew a bunch of blood, and checked my Vit D levels, my CTCs, my immune system cells (mitosis), my copper, my galectine 3 (whatever that is), my ability to metabolize anti-oxidants, and a bunch of other stuff. My Vit D levels are great, my immune system cells "bite back" (he said), my CTCs are all really low, my anti-oxidant metabolization is terrific, my estrogen is inhospitable for cancer--basically I'm one healthy individual.
But my copper is a bit higher than he'd like, so I'm going to take a compounding drug to lower it. The article he used (Annals of Oncology Advance Access 2/13/13--Tetrathiomolybdate-associated copper depletion decreases circulating endothelial progenitor cells in women with breast cancer at high risk of relapse) basically claims that higher copper levels produced higher rates of recurrence.
Normal range is 70-175 and I'm at 144, so we want to reduce it and get me in the lower range.
Lower galactin 3 seems to indicate higher recurrence of some cancers, and I'm below normal by a few points (22 and above is what to shoot for I'm at 19) so I'll be taking citrus pectin to correct that.
Otherwise, everything else looked really good to him. I'm relieved.
Re: rads, i had bleed through radiation burns (like a sunburn) on the upper right quadrant of my back/shoulder blade for a few weeks. It itched, but otherwise healed up fine when rads was over.
Claire
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Thanks for the info Claire. It of course causes me to have more questions.
Regarding the back burn from Gail and your burns Claire. Here I am 5 days post 16/16 rads. I am a mess. There is no skin underneath it had cracked open and now the cracked open part has cracked open (are you fricken kidding me????) and I am very red, brown burnt and blistered. Now it seems to be moving further towards my back. My underarm area is in bad shape and my side extends to my back as of today the blisters are opening, its just raw. My nipple has peeled so badly that it is bleeding. I cannot express how miserable I am feeling. All the while wondering if I am even going to keep her or come Oct do the DIEP. I am just scared and not sure if I am ever going to be able to relax. She is so swollen, she makes my big C, small D look like a A. I feel angry today, pissed off angry
I can see my lymphnodes are huge like grapes and lumpy, what does the rads do to them? Will they recover?
Thanks I had to get it out. I have been posting on the Spring Rads boards, more like whining. Its been 5 days when does it stop cooking??
I keep telling DH " I am a hot mess" literally...
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HI, All: Been gone for a while and just tried to read and catch up a whole lot of your posts. Sounds like by and large everyone is doing well.
Claire, I was happy to hear about your all clear. I remember my first MRI one year out. What a wreck I was. Due for my third yearly MRI next month and though the passage of time does do it's thing, I think there's no avoiding that dark place around these yearly scans. This is the PTSD that comes w breast cancer, I think. We can hold it together most of the time (more and more as time goes on, you'll see) but those tests bring us all back to that first scary minute. Oh well, that's why Xanax was created!
Interesting to hear from chocotel re pesticides. I, too, grew up in eastern Pa., and there was so much spraying of trees, crops, all the time. In fact, an apple orchard that we used to go to often, was recently put up for sale, many years after it had stopped selling apples. Well guess what, a buyer was about to buy the land only to find out that it had to be condemned. Seems the ground is permanently tainted by pesticides. We used to climb those trees, eat the apples as we picked them, etc. My Dad had leukemia and my Mom, lung cancer in the last few years (both non-smokers.) I cant help feeling that none of this did us any good. My Mom also took DES during her entire pregnancy with me, so hard to know which poison, if any, had a part in all of this. It all makes me uneasy and determined to at least now, try to live as 'green' as possible. Whenever I get slack from anyone about my wacky organic obsessions, I ignore them. Just figure my body has had enough bad stuff poured into it. Time to try to at least limit the damge. Als o feel better eating right. Can't hurt!
Sorry about all the rad issues. I had a unimastectomy, no chemo, no rads. It's got it's own issues
but not burns. Hope you all feel better. None of this is easy.Doing really ok on Femara for those of you who were asking a while back. I switched to it from tamoxifen in January. More aches and stiffness, but nothing unmanageable. Omega 3 really seems to help me with this.
Wishing you all the best, Shari
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Lemon I hope that you are feeling better today. I can't relate to the burns from rads, but I can relate to pissed off.
Please excuse me while I rant.
While enjoying the sound of my DH snoring last night, I was suddenly overcome with nausea, as I made my way out of bed I saw that the leg of my pj's was soaked in blood. Apparently 2 weeks after surgery the stitches from the spot where they took skin to graft to my chest had popped open. After loosing my dinner, and cleaning up the blood, I got furious with the whole situation. I slapped gauze on my leg, and went back to bed, to watch TV and wait on the sun to rise. Common sense tells me I should probably go back to the surgeon to let him have a look, but today I just don't want to deal with cancer, or stitches, or doctors! I just want my old normal back for a day.
End of rant. Thanks for being here.0 -
Oh gramwe that is horrible! I dont blame you one bit for being pissed off! I know you didnt want to go today but please do go tomorrow, just to make sure it is sealed/stitched back up so you can heal properly. What a nightmare. I am so just done at this point, I went back on Monday for wound treatment but have no plans to go there again. My breast is feeling better today for the first time, the underarm and back are charred and painful. I know the worst is over but that doesnt help much. I too just like you want my normal back. I know that its up to us to TAKE IT BACK.. now is the time to heal, our day will come gramwe.. I promise you. xoxo
How are you doing on the Arimidex? Are you planning in the future for reconstruction? I know Gail here can share some experiences with that.
So much love and support, I so wish I could see you all for a group HUG!
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sgreenarch,
hi, I grew up in Suffolk County Long Island and there were alot of farms especially potatoes out that way. Interesting about the apple orchard and pesticides. So at this point both my parents have had and presently one has cancer. My mom had bc with 3 different types of cancer. So- its an interesting thought and I really do wonder whether the increase in bc is because of the poisions. I appreciate you sharing. So thanks for sharing.
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Gramwe,
I know its upsetting but please don't give up and get discouraged. Return to the medical folks and have them fix you up. You will get through this. Hang in there. Let us know how you are doing.
take care
CR
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Gramwe, Im sorry that you are having this aggravation but I also hope you let the surgeon look at your leg just to be sure it is healing. Hugs to all
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Chocolaterocks so nice to see you. You made me think of a question, you said your mom had 3 different types of BC. Is this rare? I had ILC but along with it LCIS and DCIS all removed in the same lumpectomy all within a golfball size removal. I guess I assumed this was common.
Did anyone else have others to go along with their ILC?
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Yes i had same as you
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Lemon, I haven't looked at my pathology report in a while but I seem to recall there was that same mix of different types. But I guess ILC was most prominent. At least that's what was causing the close margins of my first LX and the need for a re excision.
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yep, my main tumour was ILC, but I had another small lobular, a LCIS, DCIS, small IDC and a harmatoma, all in the same breast
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Naturopathic oncologists--bleah! I do have complete faith in mine, but wow. They charge as much as MDs. I just got a call from the pharmacy in WI that is supposed to fill my glocolene supplement to reduce my copper levels--and I had to cancel the order. $480 for ONE MONTH. The citrus pectin my NO also prescribed is $105 a month, so I'm going to find a way to pay for that. And the phone consultation to go over my labs -- 45"---99$!!!
I'm going to find another way to reduce my copper levels--it seems a water filter on my tap is one way, and I asked for some cheaper supplements to take to reduce them instead of $480 a month.
Frustrated today.
Claire
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Lemon,
hi- yes so mom had three cancers and lcis and I had ilc in 4 out of 11 samples and invasive ILC. which is why I decided on a bilateral. Hope that helps.
Claire- I assume you got your copper levels tested by a natural doc? Could you share more.
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Have one for you and one for us! We love you Claire!