Chemo Starting Sep 09
Just got my port placement yesterday, having heart test tomorrow... I should be starting chemo around Sep. 1. Anyone else in my company?
Comments
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Hey September Sisters! I found out today that I will be starting Taxotere and Cytoxan on September 11th. The date is a little spooky, but it will be fine.
BTW, I will give you ladies a little background info. I'm 45 and I was diagnosed with ILC in early May. I had bilateral mast with immediate TRAM reconstruction July 14th. I met with my oncologist on Aug. 5th and she asked me to enroll in the TAILORx trial. She also told me that my ILC was pleomorphic, and not pretty under the microscope,(I wonder is any cancer pretty under the microscope?). She wasn't happy about a 3mm margin and sent me to a radiation oncologist, which was annoying because the rad onc was fine with the margin and said no need for radiation. I did ask her to walk me through my pathology report though, and she explained more about the pleomorphic ILC and also said I had pleomorphic LCIS in both breasts, and she was very glad that I had had the breast without the tumors removed as well. My ILC was 1.9cm and grade 2. My oncotype was a 24 and the TAILORx trial randomized me to chemo and tammox.
Okay, that's my story and I'm stickin' with it.
Hope you all have a good weekend,
Susan
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Hei all September chemo sisters! I started a "starting chemo in September 2009" thread a little while ago and it looks like we now have 2 threads going with about the same purpose. I don't know that we neccesarily need to consolidate the threads but I would like to invite you all to visit the other thread in case there is info that helps you out. Good luck to you all with starting the chemo....
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Hi. I am starting chemo on September 9th also. I have my port put in on September 2nd. I signed on tonight to get some info on the chemo that I am scheduled to receive. My doctor is giving me Adriamycin and Cytoxan for four treatments scheduled for every 14 days and then Taxol for four treatments. He is also asking me to come back to the facility the day following chemo for a Neulasta shot.
Good luck all!
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I would like to add my own name to September chemo, although I do not have a start date yet. I had a lumpectomy June 2nd and my Lymph node surgery June 16th. I then had 35 session of radiation which I just finished on August 28th. I had to flip-flop my radiation and chemo due to some stomach ulcers, anemia in the spring, right before the breast cancer was found, and low iron.
My pre chemo CT scan is scheduled for the September 14th and I see my oncologist again on September 18th. He is hoping to start chemo in late September, but I will still need my port placement.
Can anyone tell me how long between placement and the start of chemo is? Is there a specific time to heal?
Oh and my chemo regimen is 8 weeks, every two weeks, so 4 sessions of Adriamycin and Cytoxan and then 12 weeks, weekly of Taxol. Sound like the same regimen as you VickiLynn. By the way what did you mean about your foot?
Anyway-I would love to join the September sisters, hopefully my chemo will start then and I won't have any glitches.
Good Vibes to all of you!!
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Hi September ladies, I start 4 rounds of Taxotere Cytoxan on Sept 10th. Still hoping i make it to the appointment as I have a vision of going to the cantina and day drinking instead haha. Im willing to give it a shot and hope i respond well. there is a good forum on here called tips for chemo and i have my arsenal of supplements, prescriptions, and over the counter meds to cope. There are so many tips. Sounds like the most common side effect is neuropathy which can cause tingling and numbness of hands and feet and chemo brain. I just learned chemo brain is a form of neuropathy and can be helped with alpha lipoic acid and B-12. im doing an integrative approach combining holistic and traditional medicine. I drive myself crazy with all the info on the internet and hope i can have the courage to show up at the start date!
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RonnieKay: It's all so confusing! The Taxol Part 2 I know is once a week for 12 weeks. The Part 1 is I think every 2 weeks. I'm calling the office on Monday and see if they can set me straight! Haven't tried the Look Good classes yet. I do have a friend who wants to give me a "Scarf Party". It would just be 4 or 5 of us, but she's already bought me scarves and another friend is really into tying them and my daughter-in-law is sewing me some kerchiefs. I've always liked hats so that will be fun - don't look forward to wearing one all the time, though. Not sure if I want a wig or not.
I am nervous about starting on Tuesday, but this website has been so helpful and when I read from those who've been through it that it's "Do-able" I think, "OK. Thousands have done it before me. I can do it too."
SOME HELP FOR NAUSEA? A nurse told me that ginger anything is good for nausea (cookies, tea, ginger ale) and today my husband found a great ginger ale (I was not a fan before) and it's organic - using cane juice for sweetener and lemon juisce and brewed ginger. Really, really good. I'd never even heard of the company before, but found out they are just about an hour south of where I live! The name is Santa Cruz Organic Ginger Ale (Though it's actually made in Chico, CA - at least the organic sodas are). Really worth looking up. On line www.scojuice.com and they can tell you where it's sold in your area. Look for real ginger in products - like ginger snaps...
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RONNIEKAY OH! forgot to say Happy Anniversary!!! We're working on 37 years : )
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KRCLL Thanks for letting us know about the other thread. I looked all over trying to find one before starting this one. I'll try to find you again!!!
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DENVER DIVA That date is a bit spooky, but then what could be spookier than having our veins filled with strange chemicals that have to be countered by other strange chemicals through a tube that feeds directly into our heart! May God give us grace to go through this trial.
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BarbAnne I had my port placed on Monday and I'm starting chemo this Tuesday... they actually told me that they can start as soon as a few days after placement. I'm glad they didn't - and that I've had time to heal a bit. I was pretty sore for the first 3 days after placement and you have to be careful not to lift anything too heavy. It's quite uncomfortable those first few days, but now it's so much better. I'm told I will come to appreciate it soon.
The foot comment was in response to someone else who had to have blood drawn through her foot because she'd had a dbl mast and they couldn't take blood from either arm!!! The photo of my feet is at the beach in northern Calif. near Eureka - called Samoa. The other feet in the photo are my son's (he's 30) and my husband took the photo.
It does sound like the same regime of chemo and yet we have 2 very different kinds of cancer! Hmmmmmmm...
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Hey all of my September Sisters, I just thought I would stop by and say hi. I hope you all had a wonderful weekend.
I know Vickilynn, my start date is odd, but I guess I will just think of it as a sign that any stray cancer cells will be destroyed. Welcome BarbAnne, sorry you have to join this party, but it is good to have you along!
I have to go to chemo class tomorrow, so I will be oh so knowledgeable. I will be thinking of all of you in all of your different locations and yet we are all having variations of the same experience.
I added an avatar, what do you think?
Susan
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Vickilynn-your profile photo is really nice, it is calming to look at.
Thank you for the explanation of the foot thing. Sometimes I think they radiated my brain not my boob.I have a cousin who had a unusual immune disorder and after a month in the hospital her veins collapsed and they used her foot too-I am with you ouch. I am sorry Neece you had to go through that!
You are right about the hmm factor, I was told I needed to take an aggressive approach since I just turned 41 and that since my mom died of breast cancer and I had two aunts, my mom's sisters, with breast cancer. Although my aunts caught it early and survived.
To add to the hmm I was in radiation with a lady who just finished the same cycle you and I have, but the only thing I know about her breast cancer is that it was HER2 +.So to be honest although I am not a mindless follower I do tend to trust in the system sometimes, unless my little red flags go up, which they haven't.I really feel like every thing, treatment wise, I have decided to do has been the right choice.
Anyway, VickiLynn, I am sending you good vibes and thoughts for tomorrow.
Denver Diva-thank you for the welcome. Yes it is a club no ones wants to join, but I feel lucky that so many women going through the same stuff can commiserate here together. By the way I like your avatar. Good luck in chemo class.
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Hi All:
I leave in about 15 minutes to get the port placement procedure done, then on Wed. first infusion of A/C. Will check in later - wish me luck. -- Vicki
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Oh, btw, I'm a Vicki Lynn as well. Actually, Victoria Lynn.
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All you September Sisters: Hoping that you're all doing well this day. I'm really having trouble sleeping and I'm experiencing "pre-chemo nausea". If it wasn't a SE before, it is now! I guess I'm even more nervous than I thought. Today I'm going to go see the chemo treatment room at the hospital. Nobody offered to show me, so I'm just going to show up. I need to SEE what it looks like and how it works so that I can be mentally prepared for that.
The other Vicki Welcome! So I guess I'll continue as Vickilynn and you can have the Vicki : ) Glad to see you spell Vicki correctly : ) I trust that your port placement went well. I honestly was quite miserable for about 3 days after placement, but now it's barely noticeable to me. Someone was asking how long between placement and chemo and it looks like you're not waiting long at all! Will keep you in prayer today.
Diva I like the butterfly, but can't read the writing! What does it say??
I think we need a slogan for our group - any ideas?
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Hi everyone
I am meeting with my onc. on Sept. 10 - first consultation so I don't know when my actual start date for chemo is but assuming it will be in Sept.
There is another post for Sept. 09 chemo starters and I have been posting and following that one.I am also following this thread as well.
Denver Diva - I have ILC, 4cm, 0/4 nodes. Since there are so few of us with ILC I am very intersted in how our chemo regimens will compare or differ. I see that you are having Taxotere and Cytoxan.
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Hey all my September Sisters, you rock.
Vicki, I hope your port placement went well.
Vickilynn, I also have pre-chemo nausea, so I think it is an official side effect! I went to the chemo class today and saw the treatment room, it isn't bad. I think I can handle it. I know my saying is hard to read, I need to change the font. It says, "Cancer Picked the Wrong Diva". I stole it from a T-shirt design that I saw. How perfect is that? I guess I should buy the T-shirt, huh?
Delaine, I know there are so few of us ILC girls. I have heard that the drugs work differently for ILC so I am not sure what to think. My onc hasn't said anything so if you get any news on that front, please share.
Take care all,
Susan
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Hey gals!!!!! I had my port put in last Thursday and I start chemo on Thursday, September 3. FINALLY!!!!! I'll be having AC for 4 treatments (once every 2 weeks) and then I think I'll be having 12 weekly Taxols.
I'm wondering what the AC will be like.......I'm just ready to get this show on the road!
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TabathaOO, well what can we say sister? Welcome to the party no one wants to be at! I am glad you are ready to get the show on the road. I will be a week behind you so I will be anxious to here how it goes for you. Keep us posted.
Have any of you ladies decided what to do about wigs, hats, scarves, head coverings, etc.? At my chemo class they said that they have wigs available thru the American Cancer Society, has any one else had any experience with that? I went looking for hats today and Target had some cute ones, although I looked like a 12-year-old. I am thinking maybe I will rock silk scarves and big dangling earrings, and channel my inner gypsy. What do you think?
Hugs,
Susan
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Well - tomorrow is the BIG day for me. I will be going in at 9 a.m. and they said expect to stay 4 to 5 hours, which was a big shock to me. I had heard 2 to 3. I will let you all know how it goes. I visited the treatment room today (it's at a local hospital) and was surprised to see how small it was - and no room for visitors to sit except across the hall. My husband was thinking he'd stay with me, but that's not going to happen. So I'm bringing some music to listen to and a book to read and puzzles.
I guess I'll be the first of us to lose my hair in this group, too... My DIL sews and made me some cute kerchiefs and a very bright floppy hat (my 7 year old granddaughter picked out the pattern - I'm glad she thinks her Gramma is that much fun!).
And the other day I bought myself a "newsboy" cap at Target. Should work great.
But when I got home today, a friend had left a little package on my doorstep with 4 beautiful silk scarves - I probably wouldn't have picked these out, but they are beautiful. I tied one on my head and my husband really liked it and so did I.
Pretty sure I won't do the wig thing - at least not right now. I'm going for the inner gypsy thing, Susan. There's a great website that can show you how to tie some scarves... and you can also buy scarves from them: www.Tzinius.com Yep, cancer picked the wrong diva!
Well, if I don't sleep tonight, I can sleep tomorrow in my recliner...
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Hi all the Sept girls
I had my heart test and my 'chemo class' today - wow! After the litany of SE's I think they should call the Oncology unit the "Little Shop of Horrors" - perhaps the nurses could all dress as characters from the musical?
Anyway I know not all SE's happen to everyone and some just a little, so I will sit tight fingers crossed, wait and see. My first treatment is next week on 9th. Feeling a lot more nervous now!
I have decided I am definitely not a wig person so have got some lovely caps, hats and scarves to wear. BTW there is a wonderful company (US based) that advertises on line and does a very efficient mail order. I am in Australia and ordered a few things and they were on my doorstep in just over a week! this site has some truly lovely hats and so on , especially designed for chemo patients, so they fit really well and give full head coverage. I don't think we are allowed to mention business names on this site but if you just think of 'head covers' and do a Google search you might find them.... The website was given to me by the breast care nurse at my treatment centre as a younger patient recently discovered it herself and was so pleased that it offered some funky styles more suitable to a young woman as well as the trad turbans etc. Anyway I thought they were lovely.
Good luck to us all and keep swapping those tips and hints, it is great info!
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Neece- You are so right about the "Little Shop of Horrors". That would at least make fun Halloween decorations. I will try that google search.
Vickilynn- Bless you today, and everyday as you go through this. You are leading the way for the rest of us! I am sorry they don't provide space for someone to stay with you, but music will be great comfort. They told me lots of people sleep, that would be good. Thank you for the info on scarves, I am thinking that is the way I will go. My 17 year old daughter is having a hard time with the whole idea, but I will figure it all out.
May you all have the best possible day, wherever you are in the world!
Susan
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DenverDiva-I heard that you can get wigs through the American Cancer society too, I haven't ordered yet but I do have a catalog. The number is 1-800-850-9445 or you can visit their website at www.tlcdirect.org .
Also for all you lovely September Sisters there is a website www.franceluxe.com. They have some nice silk scarves, but the real treat is if you click on their good wishes link you can send them an email and they will send you a free "head hug", a lovely silk scarf with ties and elastic for a perfect fit, I received my free one a couple of weeks ago in anticipation for my fall chemo. Anyway it is lovely and the owner said to spread the word so I am.
BTW my almost 16 year old daughter is pretty unsure about the whole thing too-it will all work out.
TabathaOO- it sounds like you are having the exact same cycles as I will be and VickiLynn is, I will be thinking of you on the third.
VickiLynn- I am thinking good thoughts about you today and hope it all goes well. I also just heard 4 to 5 hours and was shocked-I am sorry your hubby can't be in there with you.
Vicki- Wow that was fast between port placement and infusion-I hope it all went well.
Can anyone tell me the name of the other September group-I tried looking but didn't find it.
Thinking of you all!
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Hi All:
The port placement went very well. They gave me propofol to knock me out, you know, the Michael Jackson drug. That is all I could think, you're giving me the drug that killed Michael Jackson. Ha.. Anyway, I'll be starting my first treatment tomorrow. Yes, it's fast, but they said they could give me a treatment the day they put my port in. I said, no way! I'm in enough pain already. Really, just a soreness on my neck. Really bruised though.
Vickilynn - 4 to 5 hours? Wow. They said about maybe 3 for me. It will feel like 4-5 hours. I hope it went well for you today. I'm thinking of ya. Isn't it great we spell our names correctly - not "Vikki" nor "Vicky" but VICKI. Yay!!
Wigs: Ugh, another journey to look for. (I don't want to scare my kiddies at school when I get back) I have been searching on Paula Young. They are cheaper than other sites. My hair dresser told me to go on there, get about a shoulder length wig and then she can style it and cut it for me. I bought some do rags from the interent as well, kind of bikerish with skull and bones, snake skin and a tie dye one for around the house. They're comfy when I wore it this weekend, but then I got really hot because I still have my hair! lol.
My school started today without me, such a bummer. I am an elementary principal and chose to take a medical leave and in the interim, my friend and former colleague came out of retirement to take over the helm for me while I beat this thing. Such a dear man to me! I'm blessed that I have the sick time to do this because I know I would be sicker if I didn't - the stress is too much.
A slogan. Hmm Super Sensuous September Scorpions? I was thinking "succubus" but that is really deamonic. (Too much Charmed on TNT) Oh, come on, laugh. You're laughing, I know it!!
Later - Vicki
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Okay Vicki, your right I am laughing! I am glad your port placement went well, and I will be thinking of you tomorrow. I am so glad you have a trusted person to leave your school to. I am the assistant director of an early childhood education program for homeless and low income kids, and I know how hard it is to trust someone with your kiddos. I have a lot of time available, but I just took 6 weeks off for surgery, and I have no one I can trust to do my job so I am going to try and tough it out and work through as much as possible. I am going to look at wigs from ACS, and try to use those when there isn't another option. I am not a wig girl, but I have the same concern about not wanting to freak the kids out. I don't know I guess I will figure it out as I go.
I had a call today and they changed my start date to the 10th, so I won't be having my own personal 9/11. My husband can't go with me that day and he is really bummed. I have a good friend going though, and it will be fine. I also found out that my insurance has a 20% deductible that I wasn't aware of, YIKES!
Vickilynn- I hope all is well with you, you were in my thoughts all day today!
BarbAnne- Thank you for the connection to franceluxe. Oh my goodness, what a nice company! I spoke to the lady, who I assume is the founder, and she was so sweet. I actually cried on the phone with her, (blush). It was just so nice to have somebody who doesn't even know me want to be nice and help take care of me in such a personal way. I picked a head wrap that I think is lovely, and it was really the highlight of what otherwise could have been a crappy day.
All right my September Sisters, I hope you are all well, and I will look forward to hearing from you soon.
Love,
Susan
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Dear Sisters of September After a glitch with the port (evidently a small clot) and some extra time flushing it out) the actual process started. First they withdrew blood through the port, then i waited, then there was the anti-nausea stuff, followed by the A (red) for about 15 minutes, then the C.
I was really surprised that I did not feel badly during the treatment at all. The time was longer than most and I didn't get out for over 6 hours because of the glitch above. They also must have mixed up my blood results becuase they said my protein and calcium and potassium levels were way too low - like someone just ending chemo. The one nurse thought to go ahead and re-rest at the end, and they couldn't get enough blood, so did it through the vein. the test came out just fine.
Just a reminder for you - if something they say doesn't sound right, have them check again ---- otherwise, they would have orderd a push of potassium for me which would have made me quite sick since my potassium is fine! Be Proactive
All that said, the nurses were great. I had it done in a hospital and it wasn't an ideal set up --- 2 rooms and too crowded. 4 recliners in 1 and 2 in the other. I was in the one with 2 and met a woman with ovarian cancer and not in good shape. We chatted off and on and when I tired of chatting or she was having injections going, I put on my headphones and listened to Kenny G or watched a movie. A friend sent us money to buy a 7" DVD/CD player. If you can afford it - it was well worth it.
You can get up and walk around during the treatment - like to the bathroom - or the hall. There was a chair where my husband could sit but people waiting for treatments took priority. He was very nervous when the port wasn't working right and they were talking about sending in a doctor or taking me to radiology .... but none of that happened. So he relaxed and was able to leave and then return off and on to check on me.
OH! and all the "pink ladies: are great. You get as many pillows as you want, and nice warm blankets (and I ended up with 2), there's a basket of chocolates and hard candies in the room, they come around with a cart of snacks (V-8, apple juice, peanuts, oreos), and if you bring something to drink, they'll supply you with ice.
I was a bit light-headed and was wheel-chaired out at the end. Got a bit nauseous at night, but took Ativan at 8 pm and again at 12 and woke up feeling good at 8 am. Supposed to take some Zofran or Compazine today.
And don't forget that your urine will be quite orange for a couple days....
All in all, I can say I survived my first chemo treatment, and am working on surviving the next couple days.
I do go back for a Neulasta shot this afternoon (in the back of the arm with a small beesting type needle).
Blessings on you all. I pray that your treatment goes as well as mine first one. It sure helped me to read before going. "God is our refuge and strength, A very present help in trouble. Therefore we will not fear. Even though the earth be removed, And though the mountains be carried into the midst of the sea; Though its waters roar and be troubled, Though the mountains shake with its swelling.... Be still and know that I am God... The Lord of hosts is with us; the God of Jacob is our refuge." Psalm 46
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starting chemo next week probably th 10th. TC X4 every 3 weeks. anyone out there startin on the same stuff? i love this site. september sisters if a TERRIFIC name
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Hi All:
I am back home from my first treatment. Great people up here in the Northern NY in Ogdensburg at the Winter Cancer Treatment Center. It was my first time. Went in at 10:00, started my infusion at 11:00, got all the anti-nausea meds. prior to chemo. The nurses were great and my port worked wonderfully. Vickilynn, so sorry to hear about your port. After 20 minutes of pre-meds, I had cytoxan first. That took about 20 minutes to go in. Then they had to push in the adriamycin through my i.v. That took about 10 minutes to push that into the hose. Looked nasty. Then they flushed my port and I was ready to go. I advise that you drink liquids, water, throughout. You want to flush your system. I am a little light headed and very tired. I too go back tomorrow to get my shot for white blood counts, what is it neulasta? It's very expensive and they were asking me since my husband is a doctor if I wanted to check with my insurance, sign it out, and have him give me the shot. I declined and will have them do it and not go through all that stuff insurance. Plus, that shot is like over 4k. Forget about it.
My nurses were great. They are a great bunch of ladies, very caring. I already told my sis in Egypt to get a bunch of beautiful textiled scarves for them for presents. I am blessed with this center. It's awesome. I am wishing that you all have wonderful people to care for you. It's important to have someone with you. My husband was with me, stepped out to the store to get the groceries and was back and I was finished. It's nerve wracking at first, but there is a light at the end of the tunnel. 1 down, 7 to go for me. Hang in there sistas and fight the good fight!
Here is a quote from Christopher Robin to Pooh that one of my early childhood teachers sent me today:
"Promise me you'll always remember... You're braver than you believe, and stronger than you seem, and smarter than you think."
Keep the promise!
Vicki
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Hey Susan- I am so glad the franceluxe worked out so well. Yes they are very nice, and I was really touched by her generosity and care. Getting the package in the mail is also fun to. I don't blame you for crying-I think I could use one, but I have spent too much time being "just fine" to let down.
Vicki-you crack me up-I love the Scorpions part it makes us sound like fighters.
VickiLynn I am so happy your first round went well, and I really hope the rest go as well. Thank you for the play-by-play it is comforting to hear someone else's story. You are right about being proactive, and I am glad you weren't given potassium. I had to have a couple bags back in March when I was hospitalized for anemia and it hurts like crazy going in. They always lace it with Lidocaine to ease the pain but it is still there. None of the nurses could explain why it hurts going it it just does.
Hope all you September sisters are well.
Barbara
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Barbara: I liked the Scorpion part too because of fighting. Thought "succubus" was a little risque?
OMG, I got on that France Luxe website, clicked on the Good Wishes link on the right and wrote my email. Laurie emailed me back in 2 minutes, walked me through what to do, and wants to spread the word. So ladies - Go on the France Luxe website and do the Good Wishes email to Laurie Erickson. She's AWESOME!! Thanks for the tip Barbara. I am going to take her info. to my center and share. Have a good night all. Thinking of yas,
Vicki
BTW, Laurie just emailed me back and is sending me the scarf. How Awesome is that!?
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