Anyone Starting Chemo Jan. 2010?
Comments
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pagowens - Thanks for sharing about the gas stories - I am still laughing when I type this!
My hair input - Looks like I am one of the few on TCH treatment - for the wonderful HER2+ cancer.
Day 16 was when the shedding started, day 17 was worse, day 18 was terrible, I even washed my hair one more time before heading out to get it shaved - tons fell out in the shower. I was shaved down to stubbies - less that 1/4 inch. Started using the duct tape every morning from day 19 out to get the lose stuff. Today is day #2 after second Chemo - top of my head is just about bald. Still have some on the sides and lower neck line but suspect that will go too.
Just-Sher - thanks for sharing that wonderful story.
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Thanks for all the comments. I am going to be patient and see if this last 15% of my hair stubble doesn't feel out. Most of it is much finer than the rest of my hair and doesn't hurt like the normal hair did (just have a little left of that). The funny thing is that this fine hair is white/gray (doesn't show up much) and mostly in the back and sides. If just this hair grew back would I look like an old man with a bald top and hair from ear to ear? Scary thought.
Just-Sher - great story about your sons class. It is fabulous that the onc and Social worker took the time to go to his class.
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lssymom - i had mine shaved right at da 14 and i'm at day 22 now (in fact sitting getting treatment #2 as I type). I still have a considerable amount of stubble. Everynight I duct tape my head and a LOT still comes out but I still have a good about attached to my head. I had pretty thick hair to start with, I'm not sure if it will all come out or not. I have large patches of no hair so I would have looked silly if I hadn't gotten it shaved.
I kind of like a bit of stubble left up there, it works like velcro and my beanie hat is going nowhere.
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friscosmom - I too refer to my head as velcro head as well. The knit caps stay on great but the stubble sticks through the scarves. I was just curious what others were encountering. Yes, we would look ridiculous if we didn't shave it.
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Hi ladies, I have been reading the past few nights but was soo tired that I didn't post until now. So far this week has been okay other than the constant need to use the bathroom (sorry for the TMI) and the never-ending pimple-fest on my face. Thx Leta for the Clearasil tip...went out and bought fast-acting clearasil today so it better get working asap! Had my 3rd herceptin today and the damn port is still not working. I am having a port study done next week to see what the problem is. It just stinks that I keep having to get stuck in the arm and that the port has been useless so far. Have been surrounded by incredible people and am so blessed to have them all in my life. Teachers that I work with are bringing in meals for my family twice a week, my dear friend ordered me pajamas through pajamagram and they are awesome. Pink(of course) and she had Beat It embroidered on them. "Beat It Day" is what we have decided to call chemo day so instead of people wishing me luck in chemo days they say Beat It. And of course my boys love singing the song.
I have to admit something...the other day I heard the commercial for the 3-day walk and usually this commercial inspires and touches me but on this morning it did not have this effect. My morning started off when I opened my People magazine and saw an article about a 37 yr old women who was on Survivor and just passed away from BC. Then my hubby told me he had dreams about me all night that kept him awake. said they weren't bad dreams but that he thinks all of the overwhelming feelings were coming at him that night. so on my way to work I heard the commercial and in the background is the song "she's a pink warrior". Well in that minute I became really pissed off. I don't want to be a damn pink warrior! I just want to be me; a healthy,36 yr old mother and wife. I don't want this disease, I don't want the label, I don't want any of it! So needless to say I had a crappy, emotional day that day. Fortunately that day has come and gone and I am back in a better frame of mind and know that I don't have a choice...I will fight, I will win, I will be a Pink Warrior! Think that was the first time I let anger sneak in. Guess it was time.
Just-Sher: sounds like a great class lesson. Also glad to hear you are free to leave the house again.
GraceOkinawa: Thx for the prayers. It is tough with the little kids but they are amazing. My 7 yr.old told me tonight that he and his 5 yr.old brother will probably laugh when they see my bald head. He looked like he felt bad saying this to me. I told him I was going to laugh at my bald head b/c I am going to look funny so of course they can laugh. Last night he was worried about me b/c my stomach wasn't feeling too hot. Said he is worried that more "bad cells"will come or that my brain won't work as well. I just keep reassuring them that I will be okay...feeling lousy sometimes but okay.
Georgiabirdgirl: Re:mommy guilt. I'm with you, it stinks. I have such a hard time trying to find a balance so that I am taking care of myself, appearing as normal and healthy as possible for them, and trying to keep things in their life as normal as I can. I feel it will be a daily struggle through most of this but in the end we will have all grown from this experience.
Mom2Bnegative: your story about your daughters friends made me cry and broke my heart as I'm sure it did yours as well. We can protect them only so much and the sad reality is that people(adults & kids) don't always say or do the nicest things. You give back everyday to your kids with your courage and strength and we can only hope that our kids will learn more about empathy and compassion from all of this.Great news about your MRI and the tumor shrinking.
Cammy2: your son sounds like a great kid. You must have done a great job as his mom:)
Nkrun: you have an incredible set of colleagues! that must make tackling your days at work that much easier. Still looking for the commercial on tv.
Stlcardsfan: Aaesome news about your tumor shrinking. I am also on TCH. My first round was broken up into 2 weeks b/c I had a reaction to the Taxotere. My next round is the 18th.
For those of you that are doing chemo before surgery, are you having scans done to see if your tumor is shrinking or it this just from dr exams? my onc says he doens't do the scans during treatment and I'm not sure why he doesn't.
Also after reading about the false negative SLN I am freaked out. I was feeling a little relief that mine came back negative but now...
Oh well, I have certainly made up for not posting the past few days. Sorry so long. Hope you all have a happy Friday and for those of us on the east coast...here comes the SNOW!!!
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Youngmom- We all have days when we just get mad that we are hear and going through this. It sucks. I don't want to be bald and boobless but I am. Sorry about the port not working. That would be SO discouraging!!
I had an interesting experience today. I met with my BS today for a follow-up from my port surgery and I mentioned my sister being BRCA1+ and that she will be having a hysterectomy but will probably just go on heighten surveillance for a while. He shocked me by saying that is not what he would do. I was shocked because he is usually careful to say it is our decision, here are the facts. I guess since she was not there and is not a patient he felt he could express his opinion. I really appreciated his candidness. The reason for his opinion is that recently, he has had 2 patients who are BRCA+ and have known it but did not prophylateclly remove their breast and now have bone and/or lung mets. He feels their Stage IV cancer was avoidable and just so sad. At the end of our appointment he gave me a hug. I was touched. I will talk to my sister in a little while about his thoughts. I don't want her to go through what we are going through. It's a tough decision for someone without cancer. Though I hate not having breasts right now, after talking to him I realize it was absolutely the right decision.
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Wow, Issymom, that would surely make me think if a doctor said that. Of course, every doctor and evey patient are as different as the cancer we carry in our bodies.
Youngmom - I had an anger day on Sunday. Sometimes it just hits you. I know a lady that found out that she had breast cancer and recently had a lumpectomy. It was little and no invasion. I was happy for her, but I cried after I got off the phone because I was a little jealous that mine had to be so large that I had to have a mastectomy right off the bat. I have had regular mammograms since I was 37 due to premature ovarian failure at the age of 30. How could this mass get so big, so fast and so "nasty" that I have to have chemo? GRRRRRrrrrrrrrrrrrr! Keep hanging in there.
I got on and read most of these before I went to teach this morning. I forgot to do the duct tape after the shave. So this morning my daughter is standing in the bathroom straightening her long beautiful hair, while I duct tape and pull my hair!!! We both got to giggling so hard thinking about describing the our morning routine to people!
When I went to school the day after I shaved my head, the kids came in to class and one of them asked, "Are you ok?" I told them I was fine. They just stared. I looked at them and asked if they liked my hat. 6 year old Cameron said, "Nope, I liked your hair!" Kids are so honest. Then I asked what they thought my hair would look like when it grew back. Sam said, "Gray". I laughed so hard. I told them, "No, I want it to grow in blonde and curly!" NOT ONE of them thought this would happen!! It was fun to talk about it. They are worried about me and talking about it this way really seems to help them.
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HI all,
Today is day 16 for me from my first chemo cycle and day 3 from my second. This round does seem better for these two days post but I know I crashed on day 4 and 5 last time. Fortunately a huge snow storm is coming my way and will bring nearly 2 feet of snow. So, I'm planning an in-house rest anyway for those two days. We have a snow blower that only my husband is using, so I am exempt from snow duty. So far less queezy stomach, no diarrhea, and today I got the same red rash on my face that I got last time. This is definitely my side effect from the Neulasta shot yesterday at 4 pm. The Neulasta can cause a rash. I expect it to be gone by tomorrow. I didn't get any bone pain for it, so I'll take the rash SE instead!
My hair is still fine - soft, pliant, a little limp but hanging on. No shedding. And it's still growing because the grey streaks are coming back - I haven't colored at all in 4 months. What's with that? Unlike the rest of you coping with hair loss -- I'm still waiting and getting more nervous about it. Like ... are they giving me a placebo, are the drugs not strong enough, is it not working -- not blasting out the fast developing cells in my body including the cancer? So, I will be relieved when I look like GI Jane or Yul Brenner because it will give me outward assurance that the damn chemo is working inside like it should!
Go figure - it seems like every bad side is also the good side - bald means it's working! Yea for bald!
Pat
UPDATE: After I posted this and finished my morning routine, I jumped in the shower to get ready for work. Started shampooing my hair...and VOILA! I'm shedding, I'm shedding!! Three handfuls - Yahoo! The chemo is working after all. Here's one poster RELIEVED to be going bald - at last!
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Youngmomof3--know how you feel. No one wants this label, but we do have it now. I feel like I will have a stigma against me for the rest of my life. I worry that co-workers will question my ability to do my job when I return to work. I also understand what your husband is doing. I have spent many nights awake reliving ancient events in my life that I had completely fogotten about, in minute detail. My brain keeps making relive my life all over again and it's annoying, but it's a part of a journey that forces us to evaluate every aspect of our lives. I think all of us can relate to what you andd your husband are feeling. That doesn't make it easier, but you're not alone.
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GraceOkinawa- I spent last night on the couch duct taping away and now have a mostly bald smooth head. There are a few patches of stubble, but the painful prickly bits are finally gone. There's really nothing you can do but laugh at the fact that our hair routine now includes duct tape.
youngmomof3- oh how I hear you. there are times when I get so annoyed by pink ribbons and "keeping my chin up" that I just want to scream. But, the good news is that I usually follow that with a happier day where I feel strong and capable. It's not all that different from the regular up and downs of life, it's just magnified by about 1000. The day the news broke about the woman from survivor, it hit me pretty hard. I have surrounded myself with a lot of positivity and hopefulness, but seeing as I am 37 and have breast cancer, it hit too close to home. Also, don't worry about the false negative sentinel node biopsy. I'm sure you would have found out by now. They do pathology in the OR and then follow up with a more detailed path report a few days later. That's when they figure out that the initial path in the OR was wrong.
issymom- it's good to hear your doctor's opinion about that issue. I am currently deciding about a prophylatic bilateral mastectomy. I already had a lumpectomy with clean margins, but now I'm not comfortable leaving my breasts behind. It's crazy how much of a 180 I have done. Because of the false neg SNB they have to go back to complete the node dissection and I'm thinking of having the mastectomy and a reconstruction done then. I just can't imagine being in this place again if I can prevent it. Plus, it would mean no radiation or follow up mammograms.
Pagowens- congratulations on going bald! Welcome to the Stubble/Cue Ball/velcro hair club. I remember when I was pregnant and had no morning sickness I was terrified that it meant things weren't going well. Of course, I was just lucky to have minimal pregnancy symptoms but it was hard to believe that. I can see how that same anxiety could apply to chemo.
Today I woke up feeling good. Now that it's stopped hurting, I'm growing fonder of my shiny head and am starting to feel like I can make it through all this nonsense. By the way, for the AC crowd, is anyone having fingernail trouble yet? My nail beds are starting to get dark. Please don't tell me I'm going to lose my fingernails too.
Happy Friday!
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I laughed at all the reference to our new addition to our hair routine, Duct Tape. It works so much better than any other tape!!
Pagowens - Congratulations on the new hair loss. It is amaing by my onc said it will start betweenday 14 and 17 and I think we all fit into that window. I do see the SE as proof that something dramatic is going on in my body. I guess I would really worry if I just sailed through all this with nothing. It's a good perspective.
Georgiabird - I am on AC and have had no nail problems (at least as of 2 days ago when I painted them so now I can't see my nail beds). The one thing I have had is a slight runny nose and a little blood in it when I blow. It may not be chemo related as we are having extremely mild weather out here in Washington (warmest Jan ever) and so the trees are budding early so it may be allergies. I agree with you, I love you all but I don't want to be down this road again and am so glad that I had the BMX.
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Youngmomof3: Part of my Chemo routine is blood draw to check levels, then physical exam by Dr to check the tumor, mass or whatever you want to call it. Before I started treatment, there was noticable dimpling in the lower left area of my breast. That is now gone. Initial measurement from the breast MRI pre Chemo was 4.4 x 2.9 x 3.2 cm. That was on 1/12 and my first Chemo was 1/13. Due to the size and how I was diagnosed right before Christmas and of course switched to a different hospital organization, it did delay my treatment somewhat. Which was a concern of mine as I just wanted this crap out!!
A previous Ultrasound and Mammogram in mid-Dec had it measured at 3.6 x 2.9 x 2.2. Man that sucker was growing fast - but not anymore!! Gotta love Herceptin! When I was in on 2/3, they measured again by hand exam and Dr confirmed it was down by at least 1 cm! The stabbing pain that I was experiencing before treatment is also gone too. When I am done with Chemo in late April, my surgeon want's to see me next to determine surgical options. I should also have the results of the BRCA test by then as well. I still have no idea what I am going to do from the surgical standpoint.
Sorry to hear your Port still is not working - hopefully they will figure that one out soon.
Duct tape has also become a part of my morning routine - I use it before my shower and after. Top of head just about completely bald, but the sides keep hanging in there. Anyone losing there eyebrows or eyelashes yet? I haven't but have heard that can happen too. On a positive note - I have no more underarm hair!
I too saw the article in People magazine about the young women from Survivor who just past away from BC. But, did everyone note that she found something and let it go for over a year before seeing a Dr due to lack of insurance. That is very sad.
Day #3 past treatment #2 of TCH, and aside from a slight headache, nothing else going on here. No bone pain from the Neulasta shot I gave myself yesterday, and facial flushing has gone away.
Take care everyone - and keep fighting!!
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Just caught up on pages and pages of posts!!! It's comforting to have others going through this at the same time. I had my first infusion on the 28th (January) and except for a VERY itchy scalp, I'm okay - so far. I'm a little irritable and anything out of the usual I immediately blame on the chemo. But why not?
Issymom - thanks for adding me to the list of January chemo sisters!!!
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Hi everyone. I started my chemo regime on January 26th. I know I'm a bit late to the group, but hope I can join. I'm doing 4 sessions of dense dose AC then 4 of Taxol. I had lots of DCIS as well as the IDC in my breast. I had a skin sparing mastectomy on December 4, 2009. My chemo was pushed back due to a dirty margin (yes, on a mastecomy!), which was re-excized early January. Clean margins, port installed, and chemo began. I have a three year old, who's been pretty amazing throughout this whole stuff, but wish she didn't have to experience seeing her mom go through this. It's also tough because she can't cuddle on mommy's chest anymore--port on one side, rock hard foob on the other. Stinks!
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pumpkinsoup - There are many wonderful ladies on here that have helped me tremendously. I had my mastectomy on Dec 11th and like you had a lot of dcis and idc. However, they managed to get a clean margin the first time. I started AC on Jan. 20. Welcome to our group.
pagowens- YEAH!!! on your balding! My hair started falling out and got handfuls of hair on Monday and Tuesday. Hubby shaved me on Tuesday and then nothing seem to come out. I was a little worried that I had shaved too soon! Duct tape did the trick and today the hair is really falling.
agbmom - welcome, glad to have you here.
No nailbed problems, but I have only had one treatment. I too have the runny nose, but no blood.
nkrun-LOVED the pictures!!!! Everyone looks like they are having so much fun!
My sister is coming to Okinawa from Florida for two weeks! She will be with me for the second chemo treatment and I am sooooooooo excited to see her!!!! I hate she is coming for this reason, but I am so happy to be seeing her.
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This is me tonight with some great friends at my WIGGN' out party. It was a great hat/scarf party with a copay tree. I had a pink barbie Christmas tree that the ladies clipped money to. I got so many great things tonight. This was better then a birthday!! I hope you are doing well tonight. This is the latest I have stayed up since New Year's Eve!
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mom2bnegative - Love, Love, Love your picture and the idea!!! How wonderful for you!!! So happy that you had a chance for fun. Times like those really help the stress of dealing with this disease! So happy for you!
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mom2Bneg- whoever came up with that idea was a genius! I especially love the big pink bouffant!
pumpkinsoup- I'm so sorry you have to be in this group, but welcome. I hope you find it as comforting and helpful as I have. I have a 3 year old daughter too, and the first couple of months after biopsies and surgeries were all about me "fending" her off. She was so used to jumping all over me. The good news is that the port side will heal quickly and soon you won't feel it at all. Then, she'll be able to cuddle up close.
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Welcome pumpkinsoup! I started AC two days after you, though not dose dense. So far so good.
Thanks for the welcome GraceOkinawa
mom2Bneg - great photo!
chasinghope - I hope you're holding up okay!!
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Mom2Bneg- fabulous idea and so fun!
pumpkinsoup - welcome abroad, this turly unexpected and bizzare journey! There is tons and tons of love and support here!
nkrun - what an awesome place to work! Still watching for the commercials! Can't wait to see it!
Grace - so nice that your sister will be coming to stay with you! Something very positive to look forward too!
No nail issues here yet - said that it can happen with the taxotere. I have been like a little old lady, everytime I wash my hands, I am putting on lotion and 2-3x a day I put on cuticle cream. I also bought some nail strenghtner that is supposed to heal, dry, cracked nails. So far so good!
Is anyone having trouble coming off the steriods? I have to take them the 2x the day before, 2x chemo day and 2x the day after. I am so totally emotional and drained the 2 days post-STERIOD I can hardly stand it! I was an absolute mess yesterday. Last night I took 2 benadryl so that I could sleep through the night and now today, seems to be much better already. Aaarrggghh - as if the cancer isn't enough to deal with - now I have this little arsenal of medications that I have to remember... I feel like some old retiree... let's see now, first I take a senokot, then I have to take my calcium +D, then my multi, then my steriod, my claritan, my benadryl, my bayer... my ..... I guess I didn't realized that we would also be getting our pharmacology certification too! LOL
Oh, sorry, I don't recall who was having port issues... I was having issues with pain in my arm (sort of near the port placement), anyway she now has me on 81 mg of Bayer aspirin, it keeps the blood thin so that everything flows properly. Since I take it every day - no problems with the port at all! Maybe talk to your doc about the aspirin. They also have me heat pack the area for 30 minutes a day (not too hot) but that is also supposed to help! Good luck with your port! As someone said to me, "Don't you wish your Port came in a bottle with some cheese?"
Just- Sher
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Just-sher - you made me really laugh about the drug arsenal! I hear you. The steroids kept me awake, but tylenol pm helped the headache they gave me and helped me to sleep. My doctor had me on them for 7 days. This next Wednesday is my next chemo and I am going to ask the doc if I can come off earlier. By the way, do you live near the cities? My dad lives in Minneapolis. I grew up in Oakdale out near Woodbury! Cooooooooooooold this time of year!!!
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Grace-Okinawa - I grew up in North St Paul and now live in Roseville! Definitely, spend a fair amount of time in the Oakdale-Woodbury area. You wouldn't believe how much woodbury has changed!! Hey not too cold today, I think we'll be in the 20's this afternoon!!
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Just-Sher: I notice the same thing about the steroids. I feel great the day after chemo--I even go to work that day. But then it's like major PMS--emotional, depressed and absolutely no energy. My sleep cycles are all over the place. I can't fall asleep, can't stay asleep and can only sleep during the day. It's crazy!
mom2Bnegativex3: what a great picture! You must have some terrific friends. I am already planning my "after chemo is over" party. Can't wait to have everyone over and celebrate!
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Hi Everyone!
I love reading all of your stories and enjoy the support that you have provided! I'm not much of a poster...more of a researcher! I had my first dose dense AC 10 days ago. Yesterday and today I felt like a truck ran me over...no energy. low grade fever 100 or 99 and just want to stay in bed. Did this happen to you? I don't need to call the onc unless the fever gets higher and reall I feel okay..just wiped out. I had the Neulasta shot and hope that this will pass quickly.
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Tamatar
I had my first dose of AC ten days ago too, but I'm not having does dense. I felt the most odd during the three days on decadron, and one day afterwards I felt strange, like I was underwater. But I haven't experienced fatigue yet. Your fever isn't technically high enough to page your oncologist, but I would call mine if I still had a low grade fever Monday morning. The Neulasta shot can cause flu-like symptoms, so maybe that's the cause of your fever. I hope you get some energy soon.
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Hi Everyone, I started my first chemo of AC on Jan 28th can I join this group. I will have 4 AC and 4 taxol. Then 6 weeks Radiation. So far I have had only one day in bed. I think that was do to up early for my grandchild Saturday Pancake breakfast Went to a Home And Garden Show then walked IKEA I came home was in bed at 4:00 didn't get out until Monday. I guess that was a little much after 2 days. I have had lumpectomy with bad margins so bilateral mastectomy. I had a few days of not feeling great but not bed ridden. I have read all your posts so I feel like I know you all. This Cancer is not going to beat me I have 4 grandchildren that I will be dancing at there weddings.
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mom2bneg-Love the awesome pics. Wiggin party what a great idea.
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Recovering from my second AC. Despite the antimedics I vomited all day yesterday and despite my lecture from the doc that I will not need Neulasta, I got a shot yesterday. WBC dropped more than expected. Feeling ok today but expect to feel worse tomorrow. Seems like Sunday has been my worst day.
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Justsher- Hey!! I went to Tartan HS and NSPaul was our biggest rival!!! I graduated in '78. Too funny! I used to work at Farrell's in the Maplewood Mall! What a small world this is! I had friends that lived in Roseville off of Larpenter!
Beads - glad to have you join us. I just love Ikea. When I was visiting my dad last year over Memorial Day Weekend, we went for their free breakfast! It was crowded, but it was soooooo much fun!! It is easy to overdo! Be careful and remember to take care of yourself.
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nkrun, hugs to you. Baby steps and know that each day behind you, even if it's a bad day, is another day you kicked cancer's a**.
I LOVE the WIGGIN Party picture! That pick hair! It's all so Dr. Suess, Whoville looking! LOVE it!
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