2010 Sisters
Comments
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Thanks Barbara. It feels so good to be back in my own bed and I've missed my puppies!!
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Sweet! Great news!
Bama--Glad you are home--continued healing!
I found a sight about herceptin that lists all the side effects, and even has a link to the prescribing info, which is very interesting. www.herceptin.com
I don't know why the oncs and nurses all say there aren't any se's!
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Janet---I had lumpectomy with sentinel node biopsy. I believe that they found 3 sentinel nodes and 1 came back positive. They took out an additional 7 axillary nodes during the same surgery. Although, 1 came back positive and there was discussion of going back for more surgery--the decision was made for no more surgery and start treatment. I am a little over half way through chemo--chemo was necessity due to lymph node involvement. Protocols seem so different everywhere (I am in Canada). I will also have rads when done--get rid of any remaining cancer for sure! You will learn more as each step comes--ask questions--feel comfortable with the answers.
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Connierf - welcome to our group, sorry we have to meet this way, but you are in a great place for answers, encouragement and support. I do not know anything about micro-mestastasis but someone will have an answer that will help. We have no real etiquette rules as we share whatever in going on, ask any question that pops into our heads and well as answer questions that we may have an answer for.
Sweetaerobabe - Great news on the negative nodes. Glad you are at home where you can get the rest you need to heal. Don't try to rush back to doing too much too soon. Give your body time to heal.
Cathy - Try putting fruit, strawberries, blackberries, raspberries in your water. I like strawberries the best in mine. The citrus fruits tend to give me heartburn. Have you tried gatoraid or propel flavored waters. Some times I will get one of those just to change things up from just water all the time.
My cough has gotten really bad again this evening and I am exhausted for coughing so much. My chest and diaphragm hurt so much I can hardly breath. I think tonight I will take one of everything in my medicine bag and pray I can get some sleep. I did manage to make it to The Old Fisherman's Warf for lunch today and then to watch the grandchildren play at the park before heading to their soccer practices. My Sweet Son in Law made dinner while we were at the last soccer practice so all I had to do when we got back to the house was sit down and enjoy. I could not eat much because I was so tired and kept coughing so much. About the time I would stop coughing someone would say something that would make me laugh and then I would have another coughing spell. The more they tried not to make me laugh the funnier they were. I wish we could stay here longer, but we will be headed home on Saturday morning.
Hope everyone has a restful evening, I know I will have a restful drugged evening!
Joy and blessings
Amy Jo
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connierf - At the time of diagnosis I expected to just need a lumpectomy followed by rads BUT I was HER2+ so I was pretty much backed against a wall on the Chemo. My first surgery was to install a port and do a SNB. On the SNB they removed the center node and a cluster of 8 came with it and at the time, looked clear. However, turned out there were 2 nodes with microscopic cancer cells in the cluster of 8. The 2nd surgery was after chemo for a Bmx and my BS took an additional 21 nodes and I never really understood the reasoning on this. Seems to me the chemo would have/should have eliminated any further microscopic cells - right? I thought that was the point of the chemo and never did really get an answer to this before the surgery. The 21 additional nodes were all clear but now I'm dealing with lymph issues which apparently I will always have. ?? Since I chose a Bmx, rads weren't necessary - at least that is what I was told. Try to get as many answers as you can before you agree to more nodes removed.
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Thanks for your responses. Yes, I think the difference may be that you had lumpect. w/ radiation, whereas I had mastecomies. My oncotype dx. came back low (9), so no chemo, for which I'm grateful. But I'm puzzled as to what to do about the micromets. (0.2 to 2MM mets.) found in one node. Standard of care is to remove additional nodes, to check for further mets, but I've gotten mixed rec'ds.
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Sorry, LilyLou, but what's Bmx? Re. lymph problems, I've read that they may be temporary.0
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LilyLou sometimes rads are required with mastectomy. I myself was in a gray zone but was advised against it due to my aggresive treatment (chemo, hormone suppression, bmx) and no nodes. Large tumors, unclear margins, close margin even close to chest wall can all require radiation after a mastectmy.
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Bama I'm sure you will now feel much better at home.
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BarbaraA Yes I am trying to do what I need to do to keep cancer at bay. I always did eat pretty healthy but I do have a sweet tooth for red licorice and gummy cherries, strawberrys and peach penguins. Oh and those peanut butter malted milk balls (dark chocolate) at Trader Joes are pretty good. Not that I eat that stuff all the time but. People keepbuying me sweets. I don't have the heart to tell them cancer feeds on sugar and they are killing me ;-)
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SE of Herceptin are uncommon but can happen. The problem is many of them are the same SE as chemo. Since most of us start Herceptin with chemo its hard to know if the drug is actually adding to the SE or not.
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connierf - Yes I was dx with the same. And No both my surgeon and my onco and all the latest studies told me that it was NOT necessary. Saying this does not mean your case is the same as mine. I do have however Grade 3 cancer and Stage 3. Still no more surgery is required. My onco felt the powerful chemo I'm on along with Radiation should take care of any left over cancer cells elsewhere in the body. Still you must make this decision with the help of your doctors. Welcome here and always pop in and say whatever is on your mind. We hope to help and support and learn from each other. Good luck with your journey.
Day 7 post chemo here and starting to feel almost normal. I was so happy to get some diet 7-up. I may try making some of my own lemon drink. Thank ladies.
Cathy
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long time at the hospital with TC and herceptin - it was yesterday. i feel good so far. a little tired- diarrohea,which is way better than last time. This time i changed my anti neausa pill to EMEND- more expensive or what. but i dont care. im having my neulasta shot today and getting ready for that nasty bone pain.......arggggggggg.
so far so good......!
dry mouth is kicking in, drinking tonnes of water............
im doing research on my breast reconstruction.......im thinking DIEP is the way to go, i have a big guT! and will be glad to see that go. hahaha
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connierf - I don't see where anyone answered you question about what a Bmx was. That is one our abbreviations for a Bilateral Mastectomy. We have several so anytime you do not get one of them feel free to ask. Sometimes we are so used to them that we forget new comers don't know what all we are talking about.
Cathy - glad you got some Diet 7-Up and do try to make your own lemon drink. My DD just got me some Lemon Lime Gatorade for our adventures tomorrow.
redninrah - glad you are doing better with this round. I decided not do the DIEP because of the longer recovery time and the greater risk for me for infections to develop. I tend to get infections really easily and sometimes for no apparent reason. My immune system was not the greatest even before BC, due to other health issues. Go for it if you feel it is the right thing for you.
I am running a fever tonight even though I have not had nearly as many or long lasting coughing attacks today. Between the asthma and the allergy medicines I thought I was getting better but my DH kissed my forehead as he and our son-in-law and grandson headed out to the hobby shop to get a model car for our grandson to put together. He asked if I had taken my temperature lately and said I should so after they were all out the door I took it and sure enough it was 99.5, not 100 yet so I am not going to the hospital. Especially since I am completely across the country from all my drs. We will be headed back to NC on Saturday so hopefully the Tylenol will help keep the temp down until we get home. I hope this doesn't delay my next treatment scheduled for the 19th, but we will have to wait and see.
Hope everyone has a restful evening.
Amy Jo
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Sisters,
Heading for 2nd treatment of TC tomorrow at 10:30am CST. I have to admit, I'm almost more nervous this time around...hoping that nothing unexpected happens in regards to allergic reactions. I have heard that some folks have a reaction on the 2nd treatment after the first one going smoothly. I really hope that this is not the case for everyone.
At any rate, hope everyone's night is going well.
Peace and prayers,
Tori
DE COLORES!
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Evening Ladies -
Well, today was a milestone! Was actually able to use a 3/4" flat iron on my hair, then just barely had enough length of hair to use a 1/2" curling iron for a soft curl rather than the unruly chemo curls. Amazing how such a small thing can make your day :-)) For the first time since January, I didn't feel I absolutely had to wear my wig. Liberating!!!
connierf - Bmx is a Bilateral (or double) mastectomy. Sure hope the lymph problems are temporary but surgery was last April & the fluid seems to be picking up momentum.
Cathy - Glad you're feeling better. Where are you in your Tx regimen?
redninrah - I considered DIEP and PS said I was a perfect candidate however I was afraid of the long recovery time. I opted for Single Stage Implants (no stretcing, no additional surgeries) which was done at the time of Bmx. I took weeks and weeks to get past the pain and have decided putting something foreign in your body is just not a good idea - at least not for me and wish I had just not done anything. Now I'm not only dealing with lymphedema but also chest wall edema. Maybe I'm an exception as there seem to be many women happy with reconstruction but really wish I had known more before I made my decision for implants. You are smart to be researching the subject and wanted to note my experience.
lago - You provide great info - thanks.
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Tori - Good Luck thinking of you!
LillyLou - Thank you. I've just completed 2nd round of FEC and one more FEC, then 3 x Taxetore. Last one if I can keep on schedule, (hoping) will be Dec. 31, 2010. Now that would be reason for a Happy New Year Celebration even if it took me a few days to feel like celebrating.
AmyJo - Yes I'm getting through the taste bud drink wise problems. Hope your temp went down and not up. Last thing you need now is more complications - Good Luck!
Cathy
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my wife is currently in surgery for a unilateral mastectomy / DIEP reconstruction. I just got the news that her sentinel node is positive so they are doing an ancillary node dissection. Given her diagnosis of Grade 3 IDC - ER-/PR-/HER2+, poorly defined, with necrosis, I'm looking for any encouragement anyone can offer right now. I don't yet know how much they found in the node or if it has spread to other nodes. Her MRI and bone-scans were clear about 5 weeks ago.
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Hi Matthew, The fact that she is HER+ is good in that with the advent of herceptin, her cancer is very treatable. This is a great place to come for information. There are several threads specifically for HER+ folks. They can give you plenty of advice.
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Hello Matthew,
You are in the right place. Herceptin will be your wife's friend. There are threads here based on age, timing of treament. tyoe of treatment and every other thing you can think of. This is a thoughtful as well as educational message board. Sorry your family is joining our ranks but I hope you will find the fellowship here both comforting and useful.
Ginger
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Mathew: I also had grade 3 IDC, poorly defined with necrosis, HER2+. Herceptin is the newest drug for breast cancer and is only useful for us HER2+ gals. It's considered the miricle drug by many. Yes she is treatable. Yes it is scary for those of us that have these fast growing tumors but we can be treated effectively.0
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thanks for the response everyone, we have been on the DEP and the HER2+ boards as well. Just looking for encouragement now. now comes the waiting for the path report (and recovery from surgery).
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imatthew - hang in there! Your wife is very lucky to have such a caring and involved husband! Best wishes to you and your family.0
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imatthew - You and your wife are in my thoughts today and sending you good wishes.
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imatthew, You and your wife are in my prayers today.
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just an update. doing well, i can move my arm ok, but stopped the pain meds. constpitation was killing me, took 1 exlax and was in the bathroom with cramps all night .
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sweetaerobabe, Glad you're feeling better today. The pain meds can really mess you up.
ToriGirl, Good luck today. Hope you have few SE's.
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sweetaerababe I eat dried apricots and take a probiotic in my yogurt ever day to prevent constipation from IBS… granted I had to stop recently because chemo gave me the other problem.
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hello sistas.....and a wonderful husband...prayers goin out to all of you today
good luck tori girl.im thinkin and prayin all day for no SE
sweet---i ate a lot of warm prunes....it helped..feel better..
hugggggggggggggs
K
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Are you all hallucinating?? Is it true that they were supposed to put me to SLEEP during my SN biopsy?? They did mine making me sit up awake in a chair because of my spinal fusion and I was in so much pain I practically passed out at the table screaming at them!! Have they NO conscience about what they do to some of us? They also did my colonoscopy on me awake and the "B" nurse forgot to put me under and I was awake for that also. It was like a horror movie. I screamed and begged my doctor to knock me out but it seems once they start they can't give you anesthesia and he just kept on until the end. I still have nightmares about that! I think you have to take an insanity test to become certain doctors or nurses. Some of them have to be doing this on purpose!! DH had his and I made sure they knocked him out and it was a breeze for him (the colonoscopy) that is.
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My signal node biopsy was also done with no pain killer injected. It was done by a Doctor Nixon at Central DuPage Hospital in Winfield Il. I would Never allow that man to touch me or anyone I knew. He said he thought it was better to get it over with than to have to wait. It is NOT supposed to be like this any more! Inquire before you have this done and insist on medication to kill the pain.I do not mean just the cream rubbed on your nipples, I mean painkiller in the injection to numb the area. It was like having fireballs thrown down my breast in four different areas.
I too screamed. This was unquestionably the singular most traumatic event of my life. I had natural childbirth, this was more painful. I felt I was being tortured. There is no excuse for this when there are options!
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I GO TO SLEEP FOR EVERYTHIN....a long time ago a dr tried to give me a colonoscopy without anything i got up off the table and went home.my daughter brought me to a hospital because i was bleeding and they put me right to sleep.same thing for the biopsies i had.KNOCKED OUT.
no dr will ever touch me with any kind of surgery without putting me to sleep.oh yes they try.NOT ME..holy crap you who ever did any kind of tests like that are my heros.
I DO NOT DO WELL WITH PAIN.HA...EVEN WITH THE DENTIST.SWEET GAS.
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The problem with the colonoscopy was that everyone I knew who had it told me it was a breeze and painfree. They FORGOT to tell me they were knocked out for it! So I am with granny now. Knock me out or I WALK OUT!
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