Starting Chemo in JAN 2007
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Hi Ladies,
Sorry I didn't get back to you with radio info, I think Michigan Talk Radio is on different channels throughout the state. However I'm not sure the Dan Mulhern show goes much beyond Lansing. It went pretty well. I am on another one tomorrow night with the guys from the Ghost Hunters tv show just for 15 minutes. I think that one is Internet broadcast. I can look it up.
I was surprised to learn today I dropped a few more pounds.That makes 5-6 pounds in a little over a week and I'm not trying. The rads onc told me I should eat more but I explained that mild constant nausea keeps me from wanting to eat. He actually did admit finally that the rads could be causing it, but said I should just focus on getting through the treatments. He also theorized the upper arm/shoulder pain is from nerves damaged in surgery now reacting to radiation. Anyway, I don't usually drop weight this easily so while I'm pleased I'm also kind of nervous about it.
I DID drive all the way to Mukwonago and do my rads treatment topless today! Oh, the empowerment. The female rads tech said, "Well at least you don't have a cone-shaped head." I didn't know whether to laugh or cry.
What's everyone doing for the weekend? I turned down a Lake Geneva boat cruise and sent dh by himself, it was a business thing and I was tired.
Viddie hope the nails are still there. Mel, you have really suffered that nail loss quietly. Hope they are growing back.
Robbin thanks for the lovely image of pink rose and diamonds. - Skye -
Hi All,
As I am reading about the side effects of rads, I went back and reviewed the chemo stats on our spreadsheet, and I am confused re why everyone had radiation? I would love to hear why, if you are up to sharing. I was told that, in my case, which was a 4 cm tumor, triple neg, no node involvement, it wasn't necessary. I had a mastectomy. So if you feel like sharing, I would be interested.
Skye, I am sorry you are feeling punk. It gets old, doesn't it? And Lynne, hope your wound specialist can help. For the rest of us with aches and pains, I guess we just need to be patient. But that is not easy.
Joni, your garden is so lovely. I am in the flower business and I also love to garden, but my yard does NOT look like yours!
Mizsissy, I love pretty nightgowns and think that your business sounds great. You will need to keep us posted. You already have a potential customer base!
I had my muga today and will find out results next week, but honestly, I am not worried. I think the edema is from taxol, and am a little discouraged that 80 mg lasix hasn't kicked in yet. It's only been 3 days, but I am anxious to get back to normal ... and elephant ankles are uncomfortable.
My hair is progressing, but is still basically grey fuzz. I am hoping that now that I won't be having more chemo, it will take off. I would love to think I will have enough hair to go topless by our daughter's wedding Oct 6, but think realistically that probably won't happen. Oh well, it is at least growing.
Robbin, did you call the guy?
Sweet dreams all,
Melia -
Melia,
Even though I had a bi-lateral mastectomy, I am having rads because I had 2 positive lymphnodes. Plus I am er+ and pr+. If that has anything to do with it as well, I don't know. I truly believe that taxol is the source of all of our edema problems, too coincidental! These Dr's need to suck it up and admit to it, don't they? -
Melia I am having rads because I had a lumpectomy and it's considered necessary to prevent recurrence in the surgery breast. Hope your lasix kicks in very soon. I agree with Nancy...blame the Taxol! - Skye
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Just a quick chime in as I have been super busy the last couple of days re-organizing the bedrooms - Guys, I don't usually iron sheets, believe me, but DD's new set that she picked out and loves is 400 thread count 100% cotton in taupe and white - the duvet cover was a bugger to iron, but of course that will not have to be done all the time. However the matching sheets to the duvet cover were also the same cotton, and they wrinkled horribly, so they had to be ironed. I am on the hunt for co-ordinating sheets that are wrinkle-free.
I had 2 tumours - 1.7 cm. and 1.0 cms, no nodes, no lymphovascular involvement, MRM, triple positive, no rads. I just was at the breast surgeon this week who looked me over very thoroughly and was very satisfied with his work and my recovery.
I will be busy the next 4 days with a girlfriend who is visiting me from Dublin - she is from my hometown but married a nice Jewish Irish boy (there's a combo for you) and has lived in Ireland since 1981, but comes home every summer to visit her family and me. So I may be a little lax posting, but I'll try to lurk and check in possibly.
Hope everyone has a great weekend.
BTW - Skye, I also dropped about 5 lbs. this week without trying - I think the diuretic finally kicked in, and also for me it's been 2 months since I stopped taking Taxotere. I gained about 15 lbs. from chemo, mostly from lack of exercise and eating alot of carbs (bread, soda crackers, pasta) when nauseous. So the past 10 days or so when my nausea finally lifted I've been able to eat more nutriously - alot more salads and veggies, lean protein, so I think this also helped.
So hopefully this trend will continue and those chemo pounds will drop off.
Have a great weekend gals, love you all.
caya -
When I had DCIS on my lt. breast back in '04, I underwent lumpectomy and rads which my dr. said "equaled" as if mastectomy done. Now on this right breast I had a 4.3cm tumor, triple neg and with neg nodes but one close margin. Both my oncologist as well as my breast surgeon said NO to rads regardless of the close margin (the chemo takes care of anything there). The standard of treatment was mastectomy and chemo. If the mass had been I think 5 or over or had pos nodes then rads would be needed. I'm glad both my drs. agreed no rads otherwise I would have wondered if I did everything I had to.
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Caya have a great time with your friend and say hey from all of us! Also congrats on your weight loss. I don't think my doc would be bothered by mine if I wasn't having rads. His nurse said it means my body isn't getting the calories it needs to heal itself from the radiation. Back to the sour cream and cheese on everything, and I just had a nice ice cream bar. - Skye
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Melia, my radiation is because of the four positive nodes - less than four nodes and, according to my team, no radiation would have been required.
Hope your lasix kicks in soon - it took a few days for it to work for me, and even then it was a gradual process. I sort of wonder whether it was just a matter of getting the taxol out of my system, anyway, more than the lasix.
Everybody have a great weekend. -
Hello all:
Well I went to Harry Potter tonite with my niece...it was funtastic!!
Also as promised here are some pics of my back patio, notice my little chuckwagons (it is Stampede time).
Hugs to all.
Joni
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I had just a lumpectomy so it was rads for me. When I saw the onc the other day, she mentioned that I was on the borderline for chemo to begin with. Huh? I am triple neg and scored 8/9 on that aggressiveness scale. This was news to me. I suppose because the tumor was so small (1 cm) that if it had been even smaller, I wouldn't have gotten chemo. I remember something about if it's less than 7 mm, no chemo.
In the end though, I am glad I did chemo. I really want to give this thing the hardest shot I can.
And, I am headed back to Maine for a few days and then to NYC for a girls' weekend with some college friends. I will check in when I can. Have a great weekend everyone! -
Regarding Rads: I had a 3cm Tumor, and one positive node. With a full mastectomy, current practice would not have dictated radiation for me, however because of my young age (for those wondering, I am 35), and some research from overseas that indicates that it might be helpful, my onc and my rads onc both agreed that it was a good idea. There is some interesting information is this article:
http://theoncologist.alphamedpress.org/cgi/content/full/7/6/539
Joni, your back patio is as beautiful as the your front one. What a serene oasis I would never leave home!
I have not yet seen Harry Potter, a fact that I am hoping to remedy ASAP. DH went out fishing with Owen and some boys this morning, so maybe I will ditch him later (or tomorrow) and go to see it with Ana (Frances saw it on the day it opened with her team). I am actually looking forward to the book even more than the movie .I have mine pre-ordered from Amazon!
Caya enjoy your weekend
Skye-my condolences on the sour cream an cheese on your food. How terrible for you ! Your comments about weight loss are bringing out the jewish mother in me I have an unbearable urge to cook for you! Heading anywhere need Edison soon? I made some blueberry muffins this morning that are to die for slather them with butter! -
Rebecca I envy your children! Blueberry muffins, yum! My mother was a terrible cook, which is unusual for a Lutheran due to our overwhelming propensity for potluck dinners. She NEVER baked, either. The next door neighbor used to send over doughnuts in pity. Luckily both my grandmothers were expert cooks and bakers or I would have grown up thinking cooking consisted of dumping out a can of Chef Boy Ar Dee. Where is Edison, anyway? I just might show up. Right after I stop by Joni's backyard for a chuck wagon barbecue. Joni, you are tantalizing us with your gorgeous landscape. Looks like the perfect spot for some bc sister kibbitzing. Although I am holding out for Ireland!
I met my girlfriends for breakfast in beautiful downtown Elkhorn this morning and after we left the restaurant I whipped off my wig...right on the street! They had to pet the fuzz of course but agreed I could start walking around like this. DH says it has made amazing strides in the past week. So I'm headed to Janesville topless to shock my mother who never saw me bald. Should be fun! - Skye -
My tumor was 7.5 cm at its largest point so that is why I am having rads. I understood anything over 5 cm even if not in the lymph nodes or good margins, you have radiation.
Rebecca I'm going to email you my pictures of my hair to post. -
Skye - congrats on going bald. My mother was a terrific baker. Today I remembered her as I made an apple pie but I cheated and bought the ready made crust.
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I had a lumpectomy and always expected to do radiation. On my sentinel node biopsy they found cancer in the 2 nodes they removed, but the medical oncologist didn't recommend more surgery to test and remove more lymph nodes.
When I saw the rad onc last Monday, he said I was in the gray area about whether to radiate the lymph nodes above the breast on my chest. If less than 4 nodes are positive for cancer they usually don't include those nodes, but since I had only 2 nodes tested he decided to include this area in the radiation field as well as the nodes under my arm. -
Hi ladies:
I had rads because like Amera, I had a lumpectory for a 1.6 cm tumor, triple neg, 0 nodes, scoring 8-9 on the aggressivness scale, so rads were needed. With us triple neg gals, it's a one shot deal, so the aggresive approach is called for - we don't get Arimadex, Tamoxafin, Herceptin, etc., only chemo/rads.
have a good day!
tlc -
Skye it is a very odd thing, but my mother was a horrible cook too. In my case, however, I would have been GRATEFUL for Chef BoyArDee because she did not know that she was not a good cook, and went ahead and made home-cooked meals regardless. I think my love for cooking (well) derives from my attempt to put the culinary scars of my childhood behind me.
Edison is in New Jersey, right near the Outerbridge Crossing to Staten Island
Check it out! -
Mary I can't wait to see the pics of your hair. As for pie crust, I usually buy the mix and then add the water and roll it out, tastes just like home made. My older son is addicted to my dutch apple pie so can't do it any other way. I learned to cook gradually using Joy of Cooking as a guide. Rebecca it's so funny both our moms couldn't cook. My book editors for the "Weird" books are in Orange, N.J. so who knows maybe I'll get there someday.
I did go topless to Janesville today, Mom looked horrified at first but she got used to it. My sister and one brother were also there to enjoy the sight. It's just my temples with scalp showing now. I also went topless to the Gander Mountain store where I got a lot of strange looks from the hunter guys looking for camo gear. I was getting a non-soak t-shirt to wear on our trip to the Gulf next month that the rads onc said I had to wear if I swim. Anyway, I stopped thinking about my buzzcut status after a while and it was just nice not to have something covering my head in public for a change. Another milestone - Skye -
Viddie, how'd the first biggie Herceptin go? Good, I hope.
Re: toenails, Jaclyn came running over to me at her last day of school party and jumped on my toe accidentally. Lost it 3 weeks later. Just in time for pool season, etc. It seems like it's taking an ETERNITY to grow back. For that matter, it had better!
Joni, AWESOME garden! You remind me of my neighbor, Ann. To go over there is to visit a page of Better Homes & Gardens. Me, I came home to a dead hemlock (gonna be $ to replace!), a big brown patch on my lawn despite "Tru Green Chemlawn", which I refer to as Tru Brown. I may be done with them. I know they are bad for the env. & all that stuff too...
I am home and enjoying the quiet this am. Everyone is still asleep. That trip knocked me out. Waaaaaaaaaayyyy too much driving. And then to have to go to Chicago on Fri... (w/my kids, mother and aunt)... i yi yi. Well, maybe I'll feel more up to it by then. I usually do.
Jan, the Charlotte area was very nice. My friends live in the Hamptons in Huntersville. What a gorgeous neighborhood. So pretty, it looked pretend. I loved the Birkdale mall area...reminds me of Easton, here in Columbus. We had dinner at Northstone, which was very pretty. We also drove up to Lake Norman and that was very nice too. Some pricey real estate there! Took us 7 hours to get back. Easy drive though, because it was 77N all the way to 70W into Columbus. Our mistake in going down to Myrtle Beach was to follow TripTik and Mapquests advice to take this back road, 33, past Ohio University, through all this farmland, etc. I was wiped after so many back country roads. Then we had to do it all over again once we reached the Carolinas as there's no direct route into MB. Now that I know, I'd go 77S to 26W over to Charleston. Long, but easy drive. Charleston was very nice. It's old, like Boston...kind of reminded me of a much cleaner New Orleans. But my new favorite place is Isle of Palms. OMG! To die for. My next big vaca. will be at a resort there called Wild Dunes. What a spot! Far prettier than anything I've seen in south Florida.
Skye, sorry about your continued nausea. That's not fun. I didn't know you worked with the actual Ghost Hunters show people. My DH and son watch that and the DH goes around yelling "Spirit!!!! Spirits!!!!!!!!" mocking it w/my son. It's pretty funny watching these adults get so freaked out on TV. Oh, our Charleston ghost tour wasn't all that. The most enjoyable part was watching my sons freaked out anticipation of entering the dungeon. He nearly chickened out a la Haunted Mansion at Disney (after waiting an hour in line!). He finally came in. My daugther was trying to lead the tour guide. No fear there.
Don't even want to get on the scale. We ate out every night and I'm sure I'm gonna pay for it BIG TIME! Rebecca, I'm NOT coming to New Jersey for your good cooking! -
hey there I am back for the weekend and wow what a good thing that some of us are done .
congrats lynne , rebbecca on finishing rads ! I am doing rads cause was triple neg with 2.4 lump and out of 16 nodes 8 were positive . The largest lymph was 4 cm . So rads was not an option I had to have them . I a getting red and itchy , the dr hasgiven me cortizone for the spots that are flaky . Getting rads to my back , shoulder and breast . So far I am ok , have till Aug 1st or 2nd to be done .
My youngest daughter came down to Toronto last Wed and we went to the art gallery and to the arts distict Queen St west , we were in a art supply store by the Ontario College of Art , man I was like a kid in a candy store ! bought some supplies and a little sketch book taht I can fit in my bag , I doodle in it when waiting ...... something i do alot of . Also a set of watercolours that I can take camping with me .... Mizsissy I am lovin them , will post somethin as soon as I can get the sketches scanned ....
Joni your garden is looking goooood .... you must have had more rain than we have, and i hae heard that you re getting humid there ?
Lynne , I have been getting into baseball as most of the tv's at the lodge are taken by the men as the number us 3 to 1 . Go Toronto Go ...... and hey Joni whats with your football team there ? The CFL is on the tv alot too ....but I do not mind watching sports , we all get along well at the lodge I am at .... good support ....
We are all in the same boat , chemo brained out , funny the men do not loose their hair , you can tell the breast cancer gals ! I have been going topless alot , wearing baseball caps more the wig is on its last legs ...
Have eyebrows and lashes and can put on mascara woo hooo that makes me feel good...... I can see myself commin back in the mirror and it is a great pick me up .
Caya my girls are painting their rooms and i have furniture in the halls my my house is a disaster ! With me being away all week the housework is lacking ...... Its been soooo long with the treatments we are all getting tired , I get home on the weekends and take it easy do some shopping , but mainly sleep , the rads add up . Whats a little dirt ?
Hubs is getting ready packng for our holidays getting the camper ready and fixing the fishing tackle .Only 3 more weeks and I am done can hardly wait ...... no more hospitals and treatments .....
I am off to get some breakfast and another cup of java ... hope everyone is doing well ! -
Hey Sharon! So glad to see your post, and I am glad that things seem to be going ok. I am still removing dirt from my house from the housework hiatus induced by my chemo. It does eventually go away .. I am looking forward to seeing your sketches!
Tina glad you are home. It sounds like you had a good time in the end, even if it was a bit of driving. You have to be so careful about mapquest etc they can really send you awry. Sorry about your toenail, that really stinks. I have been very fortunate in that I have not actually lost any nails, but a few of them are pretty scary looking. The black blotches are going away, but I have two fingernails that are not attached to the nail bed very well. It is a race to see if they will heal and re-attach or get infected and fall off. YUCK.
I thought I had escaped the rads fatigue, but MAN it hit me over the last few days. Went to sleep at about 7 yesterday, and could NOT get out of bed this morning. HUGE YAWNS. I hope it wears off soon. Skin is getting redder, not better ..hope that it is ok.
Relatively quiet weekend here we attended a surprise party for one of Francess friends yesterday, and we had the honor of delivering the birthday girl to her party. It was soooooo fun. We did really well keeping it secret until the last moment when Frances could hold it no longer and absently asked her if another child was going to be at her party. AAARRRGGGHHHH I covered it quick, and hustled them inside so that it would be moot, so no damage done I think. Poor girl was a bit dejected beforehand though, because it was her ACTUAL birthday, and her parents sent her to my house for a sleepover. I think she thought her parents didnt love her (couldnt be further from the truth of course).
Well breakfast beckons me DH is cooking this morning. Anyone for crepes ? -
Happy Sunday!
Im back from our trip to Boston. The seats at the ballgame were amazing. The players on deck were about 10 feet from us. We got to our seats at 5:15 and I didnt leave until the game was over at 10:30. It was so much fun!!! Then yesterday we had lunch with my oldest daughter Shelley at Legal Seafoods we had a nice time.
Ive missed the chats for the past couple of weeks, Im really going to try to make it this week.
I was lucky and didnt lose any toenails or fingernails! Whew!
Melia, I think the standard for getting rads with mastectomy is if you had 4+ positive nodes OR your tumor is 5cm or larger. My tumor was 7.5cm, so I had to have rads.
Mel, yup, I put all the cancer stuff away, but have no plans whatsoever to leave my group of girls here no way!
Joni, you should be so proud of your yard, it is beautiful.
Skye, congrats on going topless! Its so good to see more of us going topless and liking it! Yay!
Hows everyones swelling doing? Ive been on the lasix for a while and am going to try to get off of them this week while Im on vacation and not doing much. Hopefully I wont swell up again.
Caya, hope your having a lovely time with your friend from Ireland!
Amera, have a great time in Maine and NYC!
Tina, glad you are home and relaxing from your vacation!
Sharon, keep looking forward to your vacation and your rads will be done before you know it! And yes, the housecleaning can wait!
Its blueberry season and I LOVE blueberries! I just had a huge bowl with milk and sugar yummy! (blueberries are the ONLY food that I actually put sugar on).
I am waiting with much anticipation for my Dr. appt. tomorrow. He was away last week I cant tell you how many times I almost went to another Dr. or emergency room because of this continuing problem from the port, (sometimes the pain is unbearable) but I just dont have any confidence in ER or energy to find another Dr.
Hope everyone is having a nice weekend!
Love and hugs,
Lynn -
Tina I hear from other people that the nails do grow back, it just takes some time. Rebecca I was in the "holding my breath" mode like you for a long time but think I have finally passed the crucial time and they will all stay. I've been taking the glutamine faithfully and have no idea if that helped or not.
Hope little Frances didn't feel bad about letting the cat out of the bag. Sounds like it all worked out.
Lynn, sounds like you had a lovely time, and sorry you are still having those port woes. Do you have something to take for the pain? What is the next step?
Viddie I'm also waiting to hear how your Herc infusion went.
And Sharon it's great that you can check in and that you are finding so much support at the lodge and taking comfort in your art.
Mizsissy you must be busy with your new gown biz. I was thinking how amazing it is that you found this whole thing because you dared to strike up a conversation with Gina in a store. And how is Mena?
DH and I are planning to take a nice walk somewhere today, perhaps on one of the beautiful nature trails in the Kettle Moraine State Forest we live on the edge of. It's a perfect summer day here. I know I will need a long nap after but it will be worth it. Five more rads to go, can't wait. Hoping the nausea goes away afterward. I also read in one of my books that mild nausea can result months after chemo as your body begins cleaning out the toxins and they are in your bloodstream. Makes sense to me.
Happy summer everyone - Skye -
Hello all:
Well it's the last day of the Stampede today. I always feel sad when it's over, and this year especially as the theme this year was all about Breast Cancer. The slogan was "ARE YOU TOUGH ENOUGH TO WEAR PINK". There sure were alot of people (and guys) with pink shirts on. They raised a heck of a lot of money for BC research, hopefully one day they'll find a cure for this darn disease.
Sharon, good to hear that you are doing well in Toronto. Where are you guys going on your holidays? I don't know what is wrong with the Stampeders...oh well it's early in the CFL, maybe we'll turn things around. Those Argonauts made us look bad on Thursday..hahaha.
Tina, I would love to see Charleston and all the areas you saw. I was in Greensboro NC once, and I just loved it. I especially liked the people there, they were so warm and very hospitable.
Rebecca I'm like you. On Monday I will be 3 weeks out from rads and I seem to get redder every day. I'm still using my Glaxall cream about 3 times a day. The area that is the worst for me is under my arm.
To answer your question Melia, I had a mastectomy, but I had a tumour that was 4.8cm (5 cm usually says you should do chemo) and I had 1 positive node out of 16 taken. After they found it in my liver one onc said no point doing rads, but the onc said that I should still have rads to alleviate any local recurrance. As my liver met responded well to the chemo, they're hoping they can keep that in check with chemo / and hormonal drugs. I hope so too!! I also belong to BCmets.org, and I have met a wonderful girl on there that has had liver mets since 1998, and is still NED (No evidence of disease), so she gives me a lot of encouragement.
Lynn, hopefully tomorrow when you see your doctor you will be able to get that port all fixed up. Sounds like you had a wonderful time at the ball game!! Thinking of you each day, and wishing you well.
I go topless all the time now, went Stampeding with my colleagues from my company, and only wore my Stampede hat.
Here's a pic of me and Dan at a Stampede Breakfast last week.
Hope everyone has a fabulous week...Big hugs to all.
Hope everyone has a faboulous week -
Joni you are so beautiful! Love the hat.
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Take that back. I'll be over for crepes, Rebecca! I am actually DOWN a pound! After all the chowing down I did, I can't even imagine. I mean, I ate ice cream, onion rings, McDonalds...all those good "non-recurrence" things.
Lynn, glad you enjoyed the Sox. You deserve it. Hope you were able to forget the port troubles for a while.
Joni, great pic again! And very encouraging news about the girl w/liver mets and NED since '98. We have a woman out here who was married to an NFL player...very well known here...she was orig. dx'd in like '98 and has lung mets but she's NED, had 2 kids after dx...it's not stopping her one bit. All encouraging stuff.
Which reminds me of a phrase: Stay in the moment. I had dinner Fri. night in Charlotte w/a business partner of my husbands and his wife who is in her mid fifties. She was dx'd with something called Cadison's Disease (sp?). Basically, it causes her to have continual strokes. Very scary stuff as she doesn't know when/if the big one will come. I met her for the first time last year and she was so much more upbeat, understandably. It's really taking it's toll on her and I feel terrible for her. She had a beautiful silver bracelent w/that inscription on it. I'm actually having dinner w/her again tomorrow night as they are here on business. I need to stop eating out! Oh well.. -
Hi All,
Joni, great picture! Rebecca, you enjoy your kids so much, and I love the stories. I am sorry you are feeling the fatigue, but we have all been thru such an assault! Lynne, hope your doctor finally solved the port wound issue, this is nuts! And everyone, thanks for the info on rads. It was never suggested to me as long as I had the mast, but it sounds like I don't meet the profile. And I am grateful for that, I am so glad to be done with treatment!
I think the edema is starting to get a bit better. 80 mg seems to be doing the trick. I just got back from the gym; first time since I started taxol, and it felt so good. I mostly did upper body since my ankles and feet still are pretty swollen, but if felt so good to move!
Actually, the diff between how I felt yesterday and today is kind of impressive; yesterday was so busy, and I felt wiped out to the pt last night that I was almost in tears. I slept well and feel much better today.
Tomorrow I head off to Santa Barbara, a four hour drive, for a two day meeting. I will be done by noon on Tuesday, having lunch with a fav cousin, then driving home. Am interested to see how I do. I scared myself with two near misses while driving a month or so ago so have stayed off the freeways, but I feel sharper and more alert now, so hopefully it won't be too bad. I will just pull over and rest if I get tired.
Good to hear from you, Sharon. Hang in there. Tina, glad are your home safely. Skye, I always love to read your posts, and hope you had a great walk with no wierd encounters!
Hugs,
Melia -
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Hey mary!
You have more hair than I do that is for sure. Color? Who cares! At least it is not scalp! -
Mary, your hair looks BLONDE to me!! AND YOU HAVE LOTS OF IT!! Looks great!!
Joni
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