Has anyone started a forum for Chemo in Dec 2008?
I have just had a Bilateral Mastectomy on 11/4/2008....They found that the tumor was 6 cm and out of 8 nodes they found 2 to have the cancer cells.....I haven't been to any of the oncologists yet (medical or radiation) but I've been told I will need Chemo and Radiation....When I had my mastectomy I elected to go with the immediate reconstruction...they put the expanders in at that time. I still have 1 drainage tube left in me that will come out this week.....My PS said that the radiation might interfere with the reconstruction......I'm really scared.....cann anyone that has been through this let me know what to expect with the chemo, radiation, and the reconstruction? I know the docs will inform me but the waiting is driving me nuts!!!!!!
Thanks
Tricia
Comments
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I will be starting chemo the first week of December. My oncologist wanted to start the at the end of November but I couldn't get all the tests done in time. I feel like I've done nothing but tests & procedures. I think I'm on the downhill side of it now....at least I hope.
Last Friday I had my port put in... I have a bone scan and ultrasound of a lymph node (with biopsy if needed) tomorrow. This Friday I have a MUGA scan and on Monday I meet with the radiation oncol. On Wednesday I have a follow up with the oncol to finalize the chemo regiment.
I would like to chat with those just starting chemo. I will have 6 months of chemo before surgery.
Take care,
Cat
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Cat: Hi My name is Colleen. I was diagnosed with bc in late Sept. I had a rt.mast on 10/23 so my surgery was just about 1 mth. ago. I met with oncol to find out about chemo last Thurs. And she confirmed that I would need it. My chemo regiment will be IV CMF every 10 to 11 days for 80 days. I am a little bit scared about going so often, but they said that they find that that works best. I am waiting to hear from Dr. about when I am going to start. I believe it will be sometime in Dec. But I still have to go through a few more tests. I would definitely like to keep in touch w/people who are going through things around the same time.
Colleen
Tricia: I also had reconstruction on the rt. side. They put the tissue expander in. I had one drain which I was very neverous about, but it was relief when it came out. I have seen the PS twice for a fill up (still sounds so werid) it felt a little strange, but it did not hurt at all. I have about 3 more fill ups to go. But they did tell me that since I am getting chemo I could not get the permanent expander put in until 6 to 8 wks. after my last chemo treatment. Sorry I not sure about the radiation part, but I am sure someone out there will be able to answer your ques. on that. If I can help answer anything else, please don't hesitate to ask. Did they say when you would start treatment? When do you meet with the onco?
I know this is a hard time for all of us, but what I am trying to do is take one day at a time and I know we will get through this.
Colleen
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Looks like I'm in the right place! I had my mastectomy on October 28th with a tissue expander implanted. I had my chemo port implanted a week ago, and a PET/CT scan the next day. I meet with my oncologist tomorrow to find out the results and learn when I start chemo. The only thing I know for certain is that it will be for 16 weeks.
I believe I may also need radiation, which I dread more than the chemo. My Plastic Surgeon said that post-radiation skin is too thin to support an implant, so if I have radiation I'll also need to have the lat flap surgery. UGGH!
I agree that the waiting is the WORST. First it was waiting for the biopsy results, then waiting for the surgery, and now waiting for the chemo to start. I'm actually anxious to get going with everything so that I have a timeline for getting it DONE.
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Colleen: I don't know when my chemo starts....haven't been to that doctor yet, I did go to the radiation doc on Tuesday....he had a wonderful personality and that made a big difference. He said that I would have radiation 5 days a week for 33 days....he also said that the reconstruction should be fine. The ps also told me that they might have to do the lat flap surgery or tummy tuck surgery if my skin gets too thin, but the radiation doctor said it should be okay. I don't know but the rd made me feel alot better about all that was going on. My daughter is a hair stylist and is getting info about wigs so I will let everyone know when I find out these things...I think we all can help each other by talking out these scary times...
Tricia
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Hi Ladies ! Isn't it great that we have each other to share experiences and offer support while dealing with the same damn thing !
I was diagnosed on 10/20 with ILC on the left breast. On 10/29 I had a lumpectomy on the right breast which path came back clear, thank God ! On 11/05 I had a mastectomy on the left and sentinal node biopsy, had multiple tumors, the largest 5.5 cm and microscopic evidence of cancer in the node, today 11/19 I had an axillary node dissection and a port a cath inserted in preparation for chemo.
I'm waiting on x ray results which were prompted by two spots seen on Monday's bone scan as well as the path from todays dissection. I go to post op appt and drain removed on Monday with surgeon and see medical oncologist on Wednesday to find out what exactly will be my chemo recipe, she tells me we will begin 12/10.
I am feeling surprisingly well...........am surprised at the tenderness of the port spot, I'm guessing this area toughens up some.
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Count me in - I start on Dec 3, four rounds of TC, twenty one days apart. I get my port "installed" on Monday because my veins are so hard to catch. Made the wig shopping excursion yesterday; it was major emotional and I worked myself into such a headache that I went to bed at 6 last night (and still no wig)!
Will this be 'our' forum? What's in your chemo bag to take along? I have my DVD player, my blackberry, my lotion and lotion socks and gloves, sugarless candy, pix of my grandchildren, a book, a soft throw, tea tree oil for my nails and q-tips so far -- what's in yours? Is anyone going alone or are you taking a friend for support? I will be going alone; chemo on Wed and then flying back to where I work on Mon morning.....which may be way too optimistic.....
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Ladies: I finally decide which chemo treatment I am going to do and call the Drs. office and she was not in yesterday. They said she will call me back today. Is there anyone who will be doing the CMF treatment? I not sure who will be going with me to each treatment. I am pretty sure my husband will go w/me to the 1st one. It all depends on when I start.
I think it also helps if we know a little about each other. I am 46 and live on Long Island, NY. I am married and have two childrend, 13 yr. old girl (her b-day on the 28th) and a 10 yr. old boy. They are both very scared about the chemo. I think for my daughter its about me losing my hair and she is afraid also she said the other day this means that I will have to go through all this to when I am older. I am hoping and praying that is not the case. Hopefully soon they will know how to prevent this. My mother is a bc surivior for the last 23 yrs. and my sister is also for the last 10 1/2 yrs. I have not done the genetic testing yet but I am thinking about it. Has anyone done the genetic testing?
Well I will let you all know what happens when I talk to the Dr. today.
Colleen
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I hope that your news is good today Colleen.... I am 44 and have 2 daughters of my own (23 & 13) and also have 3 step-daughters(23, 20, 17). They have all been very supportive and my husband has been exeptional. I still have one tube in but the PS took the others out in his office....was not very pleasant....in fact it hurt alot. This last tube is still draining 40ml and they want it down to 30. My nodes also ahowed microscopic amounts of cancer cells...in fact it was missed by one of the doctors, I'm hoping that will shorten the amount of time with chemo....that scares me the most I guess.
The front laced wigs or full laced wigs are supposed to be the best and look more natural than all the rest....I was told that if you choose to shave your head before your hair falls out to cut it to about an inch left. that way it won't itch as much...I'll let everyone no more info on that when I get it..I did google the front laced ones and got lots of info but I'm hoping to talk to someone who has already worn one of these.
Talk to you'll later and have a happy day(smile)
Tricia
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Let's make this "our" forum. Y'all sound so positive -- I've been emailing a friend of my sister's who is a year ahead of us. She told me the ONLY side effect she had from chemo was feeling dizzy a few times. That gives me hope!
I'm 51. It's just my husband and me, 3 golden retrievers, a shih tzu and our foster golden. (We volunteer for a golden rescue group.) I'm working full time while in treatment which is easier for me because I work from home. But it still requires putting in a full day at the computer.
I've got my wigs (two exactly the same), a sleep cap, and I kept two hair net thingees from the hospital when I had my port installed so that I can catch my hair as it falls out. My step-daughter is knitting me a pink throw for chemo days. I'll have my DVD player and my husband. Nice combination!
I'm scared but hoping for the best. I sure want this to be a one-time thing!
For my 50th birthday, I had a hysterectomy due to a uterine fibroid. For my 51st birthday, I was diagnosed with breast cancer. I plan to throw a huge party for my 52nd birthday next July because by that point I hope to be putting the finishing touches on my reconstruction!
I'm calling my support group Team Happy Hour. I send out a group email whenever I have updates, and I've got a stack of cards and gifts that tell me I've got a whole bunch of people fighting with me in spirit.
Pleased to "meet" all of you!
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I am 58, divorced after 33 years, an only child and both parents are dead. I have a grown son, lovely daughter in law and two fabulous grandchildren whom I want to see go to the prom and graduate and get married and give me great-grandchildren. Their pictures are in my chemo bag and on my bathroom mirror to remind me that this is all going to be worth it. I am praying that every time I look at that mirror and see my bald head that I will see them looking back at me telling me what really matters.
horsercn - the front laced wigs are called monofiliment (I think) and they do look much more real. My hair is fairly long now and really thick and my head is very large and it was just really hard to try to find anything that was even remotely acceptable. Then after I regrouped, we discussed with the hairdresser what might look best with my face/features and tried on a couple shorter wigs that both she and my friend swore looked better than my real hair. So I am thinking about going next week and getting my hair cut like the wig (instead of a wig that looks like my current hair style).
Also went online this am to headcovers.com and ordered some "bangs" - to wear under a hat or scarf or turban to look like your hair. And ordered a sleep turban and a couple hats....more tears but this time it was at 4 am in the privacy of my home, not in the middle of the wig shop!
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Good for you....we will get through this together.....I will have to go to that web site.....my daughter is a hair stylist and I hope to get info from her on which wigs are better....I just think I need a wig at this point.....I might get to just the hats and scarfs later.
Talk to you soon
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Hi Ladies, I'm Marcie and 41 years old. I live in Snohomish Washington am married with two children, a daughter 19 and a son 17. My entire family has been amazingly supportive...........I feel very fortunate.
I won't know until next Wednesday exactly what my chemo is going to be, we're awaiting path results from yesterday's axillary node dissection, only know that my start date is to be 12/10,
Thus far, I love the Raquel Welch wigs and have found a seller on e-bay (I know it sounds silly) that sells them, they are brand new, for much less than some of the other websites.....my only hesitancy is selecting a color as i'm sure you all know it's difficult to tell the shades on line.
Horsercn, I like your suggestion of leaving an inch when we have to shave..........that makes sense.
I didn't even think of a chemo bag, I need to get on with it, you all have some good suggestions with pic's a blanket, chapstick, etc.
Ok, I think we've got our group........bring on December, lets get this stuff over with !
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Good morning: I spoke to the onco nurse yesterday and I will begin my treatments after Thanksgiving. Some people asked me why not wait until after Christmas, but I want this to get started so I am that much further along. From what I can tell as long as I can tolerate the treatments I will go every 10 to 11 days for 80 days. So hopefully if all goes well I could be done sometime in February. I am definitely scared but have a lot of people willing to help. Looking forward to Thanksgiving, where I will see a lot of my family. I usually cook for my husbands family, but this year I decided, I wanted to see my family. I am the youngest of 9 and my husband is the middle of 10, so the holidays are usually crazy. I am going to the PS today to get my 3rd fill on the expander. And then hopfully I will enjoy this weekend. My 10 yr. old son is in a play "Oliver" and he has the lead and all of his family is coming to see him on Sunday. And then my daughters 13th b-day is the 28th so I will be busy the next several days. But it is good to stay busy it keeps your mind from going to crazy places.
Talk later,
Colleen
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Hi ladies. I am also starting chemo on December 4th. I will be getting dose dense - 4x A/C and 4x Taxol every 2 wks. Yesterday I attended a chemo class and it was kind of informative but I had already gained so much info from this site that I was actually giving tips to the women there! I never imagined I'd be in this position but here I am. I was diagnosed in October, had a left lumpectomy and have to have another re-incision next week to get clear margins. I had a PET scan done last Friday and still have not heard from either my BS or oncologist so I'm hoping that means good news. I am scared to call and figure if they need to tell me something, they'll call me.
I bought a wig this week and am ready to go. I wish everyone the best as we start this journey this month! I'm so glad I have all of you.
Love, Elaine
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I am 44 years old and I will be starting chemo on December 5. I had a left total mastectomy, 8 nodes removed, all negative. No reconstruction at this time.I am married and we have a daughter 12. My treatment is 4xFAC - and 12xTaxol. I am doing the treatment in my oncologist office and it will be just my husband and me. I am planning to work full time; I hope I can make it.
I wish everyone an easy treatment and speed recovery.
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Hi girls, I just wanted to pop in and let you know that I was in the group that started chemo in December of 2006. I had AC+T and then rads. I was also working full time and had two very small children. So it's been two years, and I'm here to assure you all that you can do it! It gets tough and scary sometimes, but you absolutely can get through it. At this point, cancer seems like a distant memory to me, and I hope that it will be like that for you in the future also.
I wish you all the best. Stay strong and hang in there. It gets so much better, I swear. :-)
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Thank you StefH for your encouraging note, I like the sound of cancer being a distant memory..........
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My chemo starts next Monday. My onco is splitting the treatments over 2 days, then bringing me in on Day 3 for a shot of Neulasta to keep the white blood cells up. He says the 2-day drip is easier on the body -- and I'm all for that!
The first series will be Epirubicin, Cotoxan, and Flourouracil. That will be followed by Taxotere.
I'm very encouraged that side effects will be minimal. A friend of a friend, who went through chemo last year, exercised throughout her therapy and stayed active. She said her only side effect, except losing her hair of course, was feeling dizzy now and then.
Oh, and my oncologist actually encouraged me to have a glass of wine now and then during chemo. He said it seems to him that the women who drink alcohol once in a while seem to have an easier time with the side effects because the alcohol dulls part of that sensor in the brain.
Heck, I'll toast to that!
He also said the biggest problem for women with BC is depression. I can imagine not only because of the physical changes and the toll of the chemo/rads, but also just the length of time we must be in treatment. Seems forever about now, doesn't it? So I'm going to do all I can to stay active and stay positive!
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Hi!
I start chemo on 12/2. I will be receiving Cytoxan and Taxotere in 6 sessions, 21 days apart. I have also been asked why not wait until after the holidays.....I just want this done and OVER! I want to be StefH, and have this just all be a distant memory too! I want to go back to work! I want normal!! It seems as if BC has taken over our lives at my house. I am 51, 3 adult children and 2 grandchildren. I live with my SO of 11 years, Jim. We live in the Chicago area.
I had a right uni-lat mast on 11/3. No recon at this time. Are any of you w/o recon feeling like your area around the incison is real tight?
My wig has been purchased, and I have an appointment to have my head shaved on 12/9. Otherwise my hair will fall out around my birthday, 12/15...uhhh no!!!
Nice to "meet" all of you! Talk to you later!
Carol
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Me too! I start chemo on the 2nd - 4 rounds of TC every three weeks. My daughter (a senior in high school) is helping with the wig/hat selections!
My husband is amused at our antics. The other threads on tips for getting through chemo are incredibly informative.I was hoping to escape this part of my BC treatment..... but the OncotypeDx score put me at high risk of recurrence!
Thankful we have this thread where we can meet!
Mary
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StephH - thank you for those encouraging words and I pray that we all remember how much that note meant when we are two years out of treatment and come back and post for those just starting on the journey...
A little apprehensive today - tomorrow I go to get my port placed. If anyone else is having one, there is a great description at the top of the forum. And my chemo "education" class. It throws me to give BC a whole day yet again.
Has anyone gone to the LookGood FeelBetter class through their hospital? It is wonderful (and free) - done by a cosmetologist and you go home with a wonderful bag of new makeup donated by wonderful sponsors such as Estee Lauder and Mary Kay and Chanel. They also talk about wigs and scarf tying, etc. We had 3 gals in wigs and 1 just whipped hers off during the time we were putting on makeup. And somehow the whole thing wasn't so scary anymore. Went to a second wig consult Friday and am definitely cutting and restyling my hair before I go back to work on Dec 8 (after Dec 3 treatment). She suggested that I might consider a buzz cut once my hair starts falling out instead of shaving it -- less chance of cuts (infection) and the wig may feel more comfy at first with some hair.
simvog - I too am going to try to work thru the whole thing, only taking the treatment day off (but still with my blackberry). But if one more person tells me about a "friend of a friend" who just did wonderful during treatments and you never would have known she had cancer...I am probably going to throw up! I am doubtful I can live up to that urban myth and I don't want to feel bad about myself when I don't!
Nerves are getting the better of me - think I will take an antidepressant this morn!
We will get through this! Please keep posting - it's good to know we are not alone!
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Brenny, I am right here with you! I am getting my port put in on Tuesday and I'm starting to get nervous. I slept terribly last night because I couldn't stop thinking about everything. I am also having a reincision done Tuesday so my BS can get clear margins. I am praying for clear margins!! Let's just take deep breaths today and know that we WILL all get through this!!
I heard about that Lookgood Feelgood class from the place I bought my wig. I was at chemo class last week and forgot to ask about it. Darn it! But I am going to for sure! Oh and I know what you mean about people saying "oh, you'll be fine, you can work through it, etc". I am hoping that I can work through chemo but sometimes it feels like people are playing off like it's not going to be bad and that I'll be faking it or wimping out if I can't go to work or if I feel bad. I can't explain it to others, but I'm sure everyone hear can understand what I mean.
Stefh, thank you so much for the encouragement!
Much love,
Elaine
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Brenny - I arrange with my ocn to have all sessions done on Friday and I will be off that day, but still checking emails. I agree with you totally - one more "friend of a friend" story and I might lose it. After surgery I was ok for a while thinking I have 6 weeks until chemo, not to worry. The closer I get to dec 5 the more I start getting goose bumps.
StefH - Thank you for your kind words. It is good to know that there is "better" after this entire ordeal.
I already have the port installed when I had the surgery. This Friday I had the port flushed - needs to be done every 4 weeks- and the onc took blood and I didn't feel a thing. She used the numbing spray and I was ok.
We will make it!
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Hello!
I am starting chemo Dec. 2. and I'd like to join your group. I am 43, have 2 sons (19 and 13) and a wonderful husband, who really suprised me with his ability to "be there" for me. My 13 yr. old is so worried about me losing my hair, but my dh told him today it didn't matter as long as Mom gets better. I am recovering from bi-lateral mastectomies done Oct. 30. I had expanders placed at the same surgery. I got my last drainage tubes out last week. Whew! I was SO glad to see them go - I agree, it did hurt. I won't have to have radiation. I don't know exactly what my treatments will consist of - my Onc. was waiting for 1 more test, so I will find out this week maybe. I have decadron to take the day before, the night of, and the day after treatment. I am not too bad nervous yet, but I know it will probably hit soon.
Anyway, Good Luck to ALL and thanks for being here.
Sherry
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Berry Patch We have the same treatment and schedule. I'd like to compare notes to see what we can do to lessen the SEs. You are so efficient in already having a wig and a hair cut appointment! My 18 yr old daughter selected two styles for me from the Paula Young wig catalog and I was surprised that we agreed. (thought she might select something a bit wild
) Has anybody gotten a wig from Paula Young? Her wigs were recommended to me by the lady who conducts the FeelGood LookGood class. My daughter and I will both attend on the 10th.Brenny Wow! Flying back to work on Monday? My chemo bag is still in the development process, but: iPod, throw, lesson plan, and water so far.
Msbusdriver Welcome! Let us know what your treatment will be, interesting that your sons are concerned... my daughter is seemingly taking it pretty well; both my husband and her are doing well. Saw you have a psalm in your signature; I chose Tuesdays so that I will hopefully be better by the following Monday so that I can teach in a Bible Study Class. The ladies in the class have been incredibly supportive.
All have a delicious Thanksgiving - I hope to have enough leftovers to not have to worry about meals for the family the next week!
Mary
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I am starting Chemo tomorrow. A/C every 2 weeks for 8 weeks, followed by lumpectomy more chemo and then rads. I was supposed to get my port put in today but they never called to schedule the appt, so they said they will use my arm for tomorrow's chemo.
I'm nervous and scared thankfully my husband is a great support for me. My daughters are 17 & 16, they are doing pretty good with my diagnosis, but scared becasue we lost my mom 4yrs ago to BC.
I went wig shopping on saturday and found 2 that look almost identical to the color and style my hair already is.
My boxing gloves are on and i'm ready to fight this. This site has been such a great source of information and encouragment.
I wish everybody the best
Shonda
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Shonda Sounds like the family is a great support team. I sure hope it is OK to be nervous...... and a few other emotions
, because I know I've run through a few! Maybe when we beat this we will head out to Red Rocks!Mary
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Shonda, good luck tomorrow! Getting a wig helped me alot. Mine looks almost like my real hair but only better. I'm so glad you have your daughters and such a good support system. I have been equally blessed with a wonderful partner.
I am having my reincission done tomorrow morning and getting my port put in. I'm so nervous. I met a woman at the chemo class last week who had just had her port installed and it didn't look bad and she said it didn't hurt too much. It's just so scary and I'm not looking forward to the whole hospital thing again. Luckily my surgery is scheduled for 8:30 a.m. so it will be quick & dirty (as my nurse likes to say). Yesterday I spent most of the day reading a book written by Deanna Favre "Don't Bet Against Me". It's a wonderful book and I recommend it but I don't recommend reading it right before bed like I did. I ended up having dreams all night about BC so I had a bad night.
Oh well, I have to get as much work done today as possible because I will be out the rest of the week.
Love and hugs,
Elaine
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Mary,
Hi. Thanks for the nice "welcome". I just have to tell you how that Psalm came to be in my signature. I hope anyone else reading doesn't mind. At the beginning of my journey, I was having one of those days, you know, when you are worried about everything. Well, I started praying and trying to put it all in God's hands. I was really low and a little voice told me to open up the Bible and read. That verse was the first thing I saw when my eyes focused on the words. "I shall not die, but live, and declare the works of the Lord." You can imagine the comfort it gave me. Well, needless to say I was ready to get on with it then, face whatever I may, and get through it. I had the inspiration I needed right there and I think of it often when I need encouragement.
Elaine,
I will be thinking about you tomorrow. I hope all goes well.
Shonda,
I like the boxing glove idea. I think I'll get mine on. I am already ready for the fight, but a little extra equipment won't hurt. Good luck tomorrow.
StefH,
Thanks for the encouraging words!
Happy Thanksgiving to all.
Sherry
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Hi, I am 42 and dx'd with ILC left breast, 10/08. Lumpectomy, 10/30/08. I start chemo, TC, 12/01/08. Radiation and HT after that.
I got my wig today. I got a R. Welch, and it will be good. I am married and have 3 children and live in WI. I have so much anxiety over chemo! I think the anxiety is way worse than the actual diagnosis.
I am so happy that I am not alone in this.
I wish you all the very best!
Mimi
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