2010 Sisters
Comments
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Good morning!
lisainglem and heartnsoul76- You are so right I guess I am still in the notknowing anxiety mode. I am still waiting for my onco score and won't find out till next thurs.(cross your fingers that it is back)I know I have rads so I'm ok about that.I started feelingso edgy,like I can't have anybody near me. Everything is ticking me off. I drop everything and just can't seem to be in a happy mood. That makes my family mad. They keep asking whats wrong.I just look at them and stay to myself let it go or I'll lose it.
If it weren't for these boards and a journal I'm keeping I would lose it.
I hope you all have a great day!
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Hi Inthepink! Sit down with a cup and tell me about it. I got my diagnosis a month ago, and still don't have my treatment plan. I think about the Disease kind of like a snake coiled up ready to strike inside of me and I'm not doing anything to prevent it. Kind of weird huh? But what right does your family have to get mad at you? It's not them dealing with the beast inside you is it? Not really...when it comes down to it. When they are all asleep it is you that is still awake and dealing with it. So don't let anyone put guilt on you where it doesn't belong!
If you want to throw things and it makes you feel better, then pick something expendable and throw it just to hear it crash. If it helps you to feel better! It's only a thing. And feeling better is priceless isn't it?
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Has anyone tried massage through this? Do you need to adjust massage type due to being a cancer patient? I feel sore and stiff all over and could probably benefit from a massage but a little curious if I can.
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Rachel: The center where i'll be getting chemo has an onsite massage therapist, so they apparently endorse massages. I would find one who knows about cancer though. Maybe your doc could recommend someone?
TryntoStayCalm: on my path report, they talked about receiving "tissue" with "possible lymph node" in it ?? So apparently those suckers can be a little hard to identify. My report says 1/14, but in counting the actual times the word lymph node or possible lymph node is used, I came up with 12. So who knows. I'm like you, so long as all this stuff was tested and they know only 1 was positive, I figure 12, 14, what's the difference really?
I just got home from a colonoscopy. It looked fine, they did burn off a couple of small polyps. At least I don't have to worry about colon cancer on top of BC. Gosh, we have to look for the sunny side in the weirdest places don't we?
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hi mac5 arimidex sucks.that has the worst side effects but very good results.i was on it for 4 weeks and it created such havoc on my stomach i had to go off it.tell your sister in law there are other meds that work just as good.i just forgot the names.brain freeze.someone will pop up who can remember the names one starts with a A.supposed to be just as good.
wishing all my sisters pain free days.
i just saw this on facebook.WISH CANCER WOULD GET CANCER AND STOP THE GOOD PEOPLE FROM SUFFERING.
God bless.I love all of you and remember you every day in my prayers
K
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tryn2staycalm-Did you first have a SNB? Followed by the AND? That's what happened to me. On my SNB initially it was negative, then positive on detailed path. So I had to have a second procedure to remove the other nodes. As each pathology report is separate, they only count the tissue submitted for each (they don't add them together). In my case they took 1 node at the SNB and then 9 more on the AND. So I consider it 1/10 nodes. Whatever it is, you deserve to know your pathology report clearly and completely. I would ask them to please clarify.
teklya- Please tell your Onc about your chemo SE. There are so many meds, especially for nausea. They may have to give you a different one. You shouldn't be suffering from nausea, they may just have to give you a different med. What are you taking on your days after chemo? They say Emend is the best (very expensive, don't know if they use it in Canada). Also Kytril. I get Kytril with my infusion and then Zofran for two days after and have very little nausea.
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DesingerMom- My surgeon did clarify it for me yesterday, but ty for your concern. It was SNB - (previously had Lumpectomy) 1/5 nodes + she said she agrees with the latest studies that show it is just as effective with chemo and rads and not as likely to have extreme lymphedema with just one positive node as to have AND. Not sure if you seen it but it may have been posted by deanna - newest studies findings are AND vs SNB with small amount of cancer found + chemo (and rads) = same outcome. Yet she said my onco's will find it helpful to know the outcome of SNB to help them guide treatments. I'm happy with that as I have had enough surgery and want to move on to treatment ASAP. Hoping I don't have too much trouble with chemo but we will endure what we must.
Hope everyone is feeling well and enjoys one of the last summer w/e's. Going to my trailer for at least one night.
Cathy
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i just saw this on facebook and i wanted to share this with you
http://saraleeandcarol.org to help people with cancer get treatment when ins.co. bloc access to care.I hope this helps even one person.my friends sister has stage 4 pan.can. 38 yrs.old. please if you can say a prayer for sari.i know its not b/c but cancer is cancer.we are all related
gotta really go now
huggggggggggs
K
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Mac5, your SIL needs help from a well-trained lymphedema therapist, pronto! Untreated, she's at very high risk for serious systemic infection (especially if she adds recon surgery to the situation) as well as tissue changes in her arm that will eventually limit range of motion and strength. Many (most!) doctors are not well informed about lymphedema and can be very slow to get help for it. She needs a referral from any member of her team. Here's information about how to find a well-qualified lymphedema therapist near her:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmAnd here are two reliable lymphedema information sites she may find helpful:
http://www.StepUp-SpeakOut.org (This one is specifically for women and men with breast cancer)
Tell her for me that lymphedema is very treatable, and if she gets good care she'll soon have her life back in her own control. If she's a computer person herself, do send her to the Lymphedema After Surgery forum here -- lots of "swell" ladies there who'll be happy to help with encouragement, information, and shared experience.
Be well!
Binney0 -
Rachel, after any breast cancer treatment, deep massage to the affected quadrant(s) should be avoided -- unfortunately, for the rest of your life (the lymphedema risk does not go away). A PT, OT, or MT with lymphedema training is safest, and some cancer centers have massage therapists who are savvy about lymphedema precautions. Don't ASSUME anyone you see knows what they're doing, though -- ask questions, and monitor their massage of the entire affected quadrant (hand, arm, shoulder, chest, back, and side above the waist on the surgery or rads side). If you've had bilateral surgery, both sides need this kind of TLC.
Be well!
Binney0 -
binney-Thanks for clarifying about massage after AND. I have not had lymphedema and sure don't want to do anything that might bring it on. It never occurred to me that I needed to make sure massage therapists know about lymphedema. Thank you! Do you have any opinion on hot baths? I know hot tubs should be avoided, never liked them anyway. But I am the ultimate bath queen.0
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Sisters I need you tonight.
I received a call from my onc today and she said that after reviewing my paths from my lumptectomy with the pathologist for the second time they decided to go with the reading from my biopsy instead of my lumptectomy for my HER2 reading which was equivocal but on the high side. This is after she was comfortable saying it was negative.
So she wants to treat me for HER2+....I can't tell you what a huge blow this was today. I was just coming around to 8 treatments of chemo AC/T. This changes everything. Now she is recommending 12 treatments and 9 MONTHS (one treatment every 3 weeks) of Herceptin!
Not sure I can do this. I was hoping that I wouldn't need a port but 9 months of Herceptin changes everything. The thought of it kills me.
I went to my MD for a follow up before I heard from my onc and she prescribed my 4th sleeping pill. Nothing works. My mind is too strong willed!
Anyone who is HER2 positive please let me know how you are doing/dealing.
Losing it tonight....so sorry I am not being strong. Haven't sopped crying since the phone call.
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I;m with you Cathy. Miss one day and it takes a while to catch up. I had what started out to be a funk day, but ended up pretty good. Got results from the PET scan and the CT Brain scan. Good news in that there were no hot spots in either scan in my brain just the liver and bones and we already knew about those.. He said there was nothing in my brain and I asked him if I had a brain and he laughed and said yes I had a very creative brain. We all needed a good laugh. I woke up very early with a huge headache and tylenol just was not helping. My primary physician called just to check up on me and when I told him about the headache he did drug interaction checks and said I could take the Imitrex I already had. So with that and a nap headache is finally gone. Then had some friends from out of town stop by to surprise me and they brought dinner. Which we wound up putting in the freezer for another day. French fries and Popsicles for tonight. Just too tired and it is too hot to eat tonight.
Sorry so many of us are having a rough time right now. Guess it is one of those times we all need to Saddle Up and just deal with it. Tomorrow is another day and hopefully everything will be better then.
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Jag - my first reading after my lumpectomy came up equivocal, then they did something called a FISH test, which is more accurate. The test results from that came back with a HER2- result so that's what they're going with. Did your doctors do the FISH test?
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Dear Jag82569, so sorry to hear about your bad news today. I wish there was more I could do, but know that I'm thinking of you - and everybody who got bad news or had a bad day today - and praying for you. You are all so strong, and having to deal with so much, that I can only imagine how hard days like today must be. But I know you will overcome this challenge, just as you have overcome so many others!
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Jag,
Sorry this took a while, I was in bed early but when I saw this I had to make sure I responded ASAP. I'm Her2+ and on Herceptin for one full year, it's really not bad at all! Herceptin doesn't cause the side effects that are typical of chemo drugs and although you do have to go in every three weeks for the infusion it only takes half an hour. Herceptin is not chemotherapy, it's an antibody that shuts down the Her2 overexpression.
The only thing that will be a little different is that you have to have an echocardiogram or MUGA to monitor your heart every three months, as Herceptin can affect your heart.
It's really been very easy therapy, and it's an incredible drug! Consider yourself very, very lucky to have this treatment available for what was once a devastating diagnosis.
I'm so sorry, I know you've had a lot to deal with and this is another devastating blow to adjust to. But please feel free to PM me with any questions you have about Her2+ or Herceptin.
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jag....did you know that when you cry, your body releases chemicals produced by stress? Tears are not always all bad. But I know when you can't stop crying it can't be good for you too.
I'm sure LM has cheered you up considerably by now, but who knows, you may have to tell me to Saddle Up on Tuesday........! Or when they do my HER2 Test again, I haven't had my surgery yet. But I will gladly shed tears for you in your place if you will promise me that you will let it go for one night and sleep. Or at least relax your muscles. I can almost feel the tension in your post.
One night out of nine months is not much is it? You know you've got that long, so make your mind give you one night.
Take care tonight and have a cup of coffee with me in the morning.
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Jag, jump on the Her2+ topic and read some of the posts, they will lift you right up. Herceptin is touted as a wonder drug. This is not a blow at all to you. You have the means to tackle it, and it has no side effects, except a very small percentage may get heart problems which aren't permanent.
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jag- Oh what a roller coaster. Like Lady Madonna says, there is excellent treatment if you are truly HER2+. I have seen SO many pathology report "change in reading" on these threads. There is also a LOT of news that pathologists have a lot of human error in their readings. A lot of it is dependant on how experienced and how much they read. To give yourself peace of mind, and to know that you are on the correct treatment, I would ask for a second opinion on your pathology. I think you can actually get your original path slides and send them to another pathologist (hopefully the best). I'm trying to remember if you had the Oncotype test. I know they test for HER2 as well. Prayers going up for clarity.
amyjo- So glad your brain scan came back clear and confirmed your brain was "there"! Enjoy your friends and family and try to relax while you can.
It is a glorious weekend here in NYC. I really should clean and get things in order before chemo next Friday, but I am going to play hooky. Heck if this bloody chemo isn't killing me, dust balls sure won't! Have a restful, loving, happy weekend ladies. Monday we SADDLE UP again. Yippee Aye Yay Aye!!
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jag82569 ~ God bless you real good right now. I have never know such fear, terror & helplessness as I have this summer. I've had sit-up-in-bed-screaming nightmares and a midnight anxiety attack thrown in there for good measure (which btw, I used to make fun of people and their anxiety attacks - not anymore, I ate my words right up). Cancer is such a thief, it steals so much, so fast. I ache for you and I'm lifting you up with prayer with all my might. I hope it gives you even the smallest of comfort to know that all of us here are with you and for you and are holding your hand. As we slog thru the cancer swamp, with everything trying to suck our feet into the muck, biting at us and scraping us as we soldier on, know we are by your side, you are never alone. You will get through it, you will.
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Designermom, hello!
Let me just clarify -- when I was talking about massage I wasn't just referring to those who've had ALND. Every one of us who has been treated for breast cancer is at risk. To some extent the number of nodes removed does increase the lymphedema risk, but even those with SNB or a prophylactic mastectomy have some risk. In fact the widespread use of SNB and rads seems to have resulted in an increase of breast/chest lymphedema, even while it's deceased the arm lymphedema somewhat.
The good news is, there are a few easy adjustments you can make to your lifestyle to reduce your risk.
Since our doctors often neglect to tell us about them, I'll post a couple of good information pages here:http://www.lymphnet.org (This is the National Lymphedema Network, a coalition of leading lymphedema professionals -- doctors, therapists, researchers. See their Position Papers on Risk Reduction, Air Travel, and Exercise)
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
Temperature extremes can stress the lymph system, so the recommendation is to avoid water temperatures above 102 degrees F. Some women feel it's okay to sit in a hot tub as long as they keep their affected arm out of the water, but unfortunately the deciding factor is your body's core temperature, which is elevated when you soak in hot water.
So...your call of course, but the risk is there.<sigh!> One thing that can really help is to get a referral from any member of your team to a well-trained lymphedema therapist for baseline arm measurements for future reference, risk education, and a fitting for a compression sleeve and glove or gauntlet (fingerless glove) to wear prophylactically for exercise and travel. That way you're a step ahead, and if you ever need help you'll already have someone you know to consult with.
Be well!
Binney0 -
Hi
Doed anybody know anything about a trial going on called Taylor...something.I'm trying to research it. My doc told me about it.Its for oncodx people in the 11-25 range.
Thanks
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Hello Ladies-
Thank you for all your insight, kind words and prayers. As hard as I tried to sleep of course I couldn't. I did make it (barely) to my sons high school football game -first of the season. I figure I might not make many of them this year. It was so hot and sunny, something I usually love but I am so exhausted it took everything out of me and I am back in bed now. I have so much to do before chemo, but I really don't care to do it, besides I don't have the energy.
Lady Madonna- thank you for lifting my spirits. I just have to accept that the process is going to be a lot longer than what I was initially told. How did you do with your port? Is it something everyone can see? Is it painful?
Mac5- I wish we all lived in the same town, we could have coffee every morning. So hard to explain to my local friends what I'm going through - they just don't get it. Don't get me wrong, they are kind and considerate and very loving, just not the same. I feel guilty dumping on them. I'm sick of talking about cancer, I'm sure they are too.
phxsun-Anxiety is going to kill me! It's amazing what crosses my mind throughout the night. First I start off thinking I need to go get my head shaved. I wonder how horrible I'm going to look when my long beautiful hair is gone...then i start thinking about the chemo and the port. I try to go to a "happy" place but I always come back to the, who is going to do the Christmas shopping for my kids, I need to clean out my closet, etc.......I know it sounds crazy but I go from cancer to cleaning out my closet!
For the sisters who work outside the home - how are you managing on your jobs going through chemo? Something else I worry about. I'm the one who carries the insurance for the family. I'm debating if I should take a leave or continue to work through all of this.
I will try to do better this afternoon. Going to take a nap if the demons leave me alone. Thank you, thank you, thank you for being there for me, I am fortunate to have you in my corner.
I hope everyone finds something that makes them laugh today!
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Hi Jag,
I'm glad you're feeling a little better today! Don't worry, you're going to get through this, we're here for you!
The port was not something I was thrilled about, but it's been so helpful during chemo and Herceptin. I haven't had any problems with it at all and it makes infusions very easy. Once I had to have fluids and they were able to give me them through the port.
It's rarely noticeable, the surgeon placed it low and in a position where it is almost always covered by my clothing. The only time I might feel it is if I'm a passenger in a vehicle and the seatbelt rubs it, but even then it's not painful, only irritating.
Lots of love and hugs!
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AmyJo,
So wonderful to hear there are no brain mets and no other progression! These are the reports we want to hear each and every time!!!
Thank you for sharing your wonderful news.
Blessings to you, and Big hugs!!
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inthepink- I think it is spellled Tailor Trial. I think it has been running for a while and they are finding that the scale used for the Oncotype DX should be changed. My Oncotype score is 16. With the Oncotype scale I would fall in the "low" range. I think when the Tailor Trial is finished, I would fall in the "medium" range. Try putting "Tailor Trial" in the search box. Also pubmed.gov might have more info. Good luck!0
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jag82569 - Oh Honey, I was right there in Krazytown for awhile. My PCP put me on Zoloft for my "underlying depression", except I didn't have any underlying depression, just boatloads of ANXIETY. All it did was give me all the bad physical side effects. Thanks for nothing, I took myself off of it. My daughter is getting married Feb 26 and all I could think about was what I wouldn't be able to get done for it and that if I had chemo, all I would ever remember looking at her pics was my cancer. I never told her that, but she told me that's what she was thinking too. It's the not knowing what lies ahead that drove me batshit. If I had chemo, I would have had a port and that drove me nuts too. Somebody I loved very much had to have one of those, she had lung cancer, and it bugged me then too, didn't seem to bother her in the least. The catheter in my arm for my breast MRI bugged me and that was there for an entire 2 hours is all. I clean a lot these days, something that doesn't require a lot of brainpower, but keeps me busy, there's always something that needs attention. When I couldn't sleep, I read and if it was almost light outside, I'd go out and walk or ride my bike just to watch the sky change before the sun rose. Being outside calmed me down better than anything, it's just too hot here to be out during the daytime. My surgeon gave me some Xanax, and that helped a lot during the day and to sleep too, slept like a baby and wasn't freaked out all the time. I'm off it now too, only used it for a week or so, but you might ask about it. I think it really helped me from landing in the nuthouse when things were at their worst. One day, we'll all look back and realize how awesome we are that we fought this beast and won. You ARE going to win, we'll get old and wrinkled together.0
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I was diagnosed in March, had a lumpectomy in May, Radiation June and July, and am now taking Tamoxifen. I'm feeling very hot these days!
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Hi jag, the beauty of the electronic age.....we ARE in the same town aren't we? Just grab your coffee and sit down and start typing. It looks as if one of us is always here at about any time someone else posts.
I am so grateful to find this. I'm still scared out my mind most of the time. But when it gets so bad I want to run down the street stark raving nekkid screaming........I know I can come here instead.
Truly, I'm not being flippant, it's just easier for me to joke about it than to be serious most of the time. I try to think of it in the third person sometimes just so I can handle it.
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Hi ladies,
A lot has happened in the last few hours.
Jag - I resemble the cleaning a lot these days. My water bill will look like a hospital bill! My mother used to say "It'll come out in the wash" no matter what was happening and that is what I have been doing, Washing! I have even taken clean stuff out of the cabinet, closets, and drawers and washed them again. Nothing crazy about that. ;-) I used up the box of chipped and cracked dishes so now I am on the the washing. Oh, I never told you ladies about the dishes. When I get really mad or upset I like to throw things. So I save every dish that is chipped, cracked, or just ones I don't like and put them in a box and when the need arrises I take the box and go to the back of the house an throw them as hard as I can at the side of the house. It really does help and puts unusable dished to very good use. It keeps me from screaming at my lovely family. People think I am strong, but then they do not see the pile of broken pieces at the back of the house. My sweet husband goes out the next day and without a word picks all the pieces up and puts them in the trash and I start a new box of what he calls my anger/frustration management. It is easier to put a smile on my face when I have had a chance to physically release some of the anger/frustration about a situation. I was so glad to get the good news about the brain scan but I still am a little scared about what new thing will come up during my surgery on the 2nd. I pray there are no more bad news events, but I guess I will handle them or at least my God will handle them for me when I get me out of the way.
Thank you all for being there no matter what happens or when it happens. I have had a good day today and even managed about 30 minutes at the mall shopping before I got so tired I was feeling nauseated. Came home and rested and then a old college friend from out of state came for a weekend visit and we have had a good time talking, listening to music and in general resting and relaxing. He really is a good friend and he was able to help my husband with some plants that needed re potting and trees that needed special care. I have managed to eat "real food" at each meal today not just Popsicles and french fries. This may be the day I do not loose any more weight.
For those of you that have had surgery, was anything said about bras? My PS said I should get a good sports bra to wear home and wear until my wounds heal. I am not, never have been, very athletic so I have no idea on what constitutes a "good' sports bra. Any advice will be appreciated. How do you even know what size to get?
I am off to bed for some rest while my husband and friend watch the ball games.
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