2005 ROCK-TOBER CHEMO GIRLS

Anonymous

Hi Ladies,
Regarding social security disability: I don't get it. In 1985 I received checks from Social Security when I extended my maternity leave because of post partum depression. I was only gone for 4 months. Today I know of a nurse who is receiving Social Security Disability benefits while she extends her maternity leave.
I have been a public school teacher for the last 19 years and as such I don't contribute to Social Security, but luckily I have been paying into disability insurance (Unum Provident).
If it is true that there is no available help (from Social Security) for those ladies who can't work while on treatment for cancer, then it isn't fair. That's just what I think.

AnnaM

What is the difference between dose dense and every three weeks? I saw two oncologists and one is in favor of one and the other in favor of the other. They both had studies to prove their point, but I simply have no idea how to react.

sagwa42

Hi,

I will be starting 4 x Ac and 4x taxol on October 28th. I delayed it a couple of weeks because of a big presentation I am giving. My last hurrah for awhile.

I am very nervous about my first treatment. I had planned on bringing a good friend with me that makes me laugh like crazy. Now I am wondering if that would be inappropriate to the others in the room having chemo. Could you give me some guidelines as to how I (we) should act in the chemo room? Quiet and reserved, many folks are napping? Or lets laugh like crazy? DO you all bring someone with you or go it alone? I will be driving into Bosotn (about 1 hr drive) and thought I could bring someone different each time.

Other interesting things I learned at my consult last week:

No port for me. They said they would see how it went the first time and if there was trouble, they would put in a port. I do have good veins.

I will be on a clinical trial for another kind of nausea drug called Emend (aprepitant) which I will use after my first round of AC. Anyone else doing this?

The radiologist recommended NO RADIATION for me. I had a 4 cm tumor (IDC, DCIS) and 1/24 nodes positive. MAstectomy on Sept. 7th, clean margins, not agressive, ER+/PR+, Her-. He said there would only be an increase of 5-7% with radiation, not enough to outweigh the risks. Anyone with similar info?

I am going to a "Look Good, Feel Good" workshop tomorrow then off to get measured for a wig and a prosthesis. I wish you all the best and thank you for your candid stories and information. I do not have a significant other so this site is becoming my "other". And I know you will be faithful to me!

All the best,
Katie

Anonymous

Hi Katie,
You may want to ask your chemo nurse about "guidelines" if there are any as to how to "behave" during chemo. Personally I think it's a great idea to have someone who can make you laugh. My husband will be with me, but just between you and me I'd rather take Ellen DeGeneres.
As for being nervous, I am terrified as mine is coming up this Thursday! We're lucky our veins are good, although the ones who have the ports are lucky too, in a way, because at least the nurses don't have to spend a lot of time trying to find a vein.
I have heard a lot of good things about Emend. I just went to the pharmacy to have a prescription filled for it and another drug, campazine or something like that.
As for radiation, I don't know... 5 to 7% sounds very good to me. That's the difference between 85 and 92%! I understand that if you'd had a mastectomy, though, that radiation is not as recommended compared to if you'd had a lumpectomy (like me).
My lumpectomy was in my left breast and my mother called me yesterday to voice her concern about my heart being affected by radiation. So I looked for a study that contradicted that and I found lots of information. Apparently the radiation techniques nowadays are able to better pinpoint just the breast and not other organs (Thank God!).
I hope you keep posting. I find that this really has a way of calming me down.
Take care.

ake

I'm kinda bringing a party to chemo Well, not a total party, but my parents, husband, and best friend are coming. We're going to play Scrabble while I get my cocktail. Women from my support group are stopping by...they said chemo is not that scary...that most people walk around and talk to each other or watch movies. So, I'm hoping it feels like a positive place...I'M SO NERVOUS THAT IT'S THIS THURSDAY! I'm going to have to get some words of encouragement from you all who had your first treatment before I go on Thursday

-Amy

-Amy

oldsambvca

Amy,

My mom went with me last Tuesday. I was so scared of what was going to happen afterward that I started to cry before they even put the IV in! The nurse asked if I was terrified of needles, and my mom looked at her and said, "No, she's just terrified". That same nurse gave my Neulasta shot the next day and made me promise not to cry. I got a shot of numbing stuff before the IV went in, which hurt in itself! The whole experience wasn't so bad, and I've been VERY lucky with my side effects. It sucked every bit of energy out of me, but that's about it. The nausea has been kept at bay with Zofran - I just have to make sure I eat at exactly the right time, and eat exactly the right amount. If I wait too long, nausea . . . too much, nausea . . . too little, nausea. Other than a general "blah" feeling, I have been VERY lucky. Next treatment is on 10/18. I expect the aftermath of that one will be the same, x2, but don't know.

Good luck!!

ruths2

Hi ladies-
I justed wanted to share some good news! Since my one week post-cheomo blood work on Friday, my white counts have risen from a low, low 1.8 to 9.5 today(normal is 4.5-10.5). Over the weekend I couldn't be out in any public places becuase of possible infections. The Nulasta kicked in now, my immune system is back on line, and I got to come back in to work today! I feel really strong and will be in a good place to have AC #2 this Friday.

Ruth

ake

That's great, Ruth...what a relief for you! Good luck with #2

-Amy

sewmanythings

Hi everyone, I had my first Chemo on the 5th October. Boy was I feeling rotten for four days.I was so sick - never ate a thing. Have lost 4.5kg.They said I had to drink but every sip I took came out! Tried to drink the Tablets but that was a waste ... yet yesterday and today I am on top of the world! So maybe I have to just write off four days!

I do have very senisitive teeth and sweat alot in my face? Had my hair cut really short today to avoid the stress of it falling out - hubby thinks its stunning..He also had his hair cut really really short in support... funny how it takes something like this to try a new hair cut instead of clinging to long hair.

I am a stage 2/2 IBC - choose a Lumpectomy then had to have a re-excession to get clear margins. Remove 11 lymph nodes and seven were infected.This was all in September. The Op has healed really well and I am not having problems with my arm so I am really gratefull.

I live in South Africa and my business is a quilt shop and I have been really surprised how many BC sufferrers there are out there. When my customers find out, I am amazed that they travell long distances just to call in and give me support.I realize that I am really fortunate to have this kind of support.

Wishing all of you out there a good journey as we climb this mountain together. Every chemo done is one step closer to the end!

Take care and lots of love
Monique

sherryhaire

Here it is 5 days out and BAM vomiting really set in hard I had had a couple days of naseau but thought after 5 days I was home free go figure hopefully tomorrow will be better

Serendipity

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Here it is 5 days out and BAM vomiting really set in hard I had had a couple days of naseau but thought after 5 days I was home free go figure hopefully tomorrow will be better

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Oh Sherry,
I'm so sorry. Did you take extra meds? Call your oncologist? I'm supposed to take my last anti-nausea meds for this round tomorrow--day 4.

Hope you feel better,
Jane

Serendipity

Thanks for the input about disability. I'll check into it, except that I'm also a teacher and my current district does not pay into social security. I paid in for 20 years previously, but have not for the last 3 years. I'll chekc into it though.

Today was day 3 after Chemo for me and I'm just simply exhausted. Could not get to sleep last night. Also, the oncologists office called and said my blood test Friday (before Chemo) revealed a low iron count so I'll need to go in and get an IV of iron--they're supposed to call me back with when to go in.

I've had a little nausea off and on, but terrible constipataion and bloating. I took some Dulcolax last night but it didn't do much.
Jane

Anonymous

Sorry Sherry and Jane. I am thinking of the two of you and hoping that you will get over this hump soon!

danahollis

Hi Ladies... just wanted to stop in and say hello!

Chemo room atmosphere??? At first, I brought company and we would chat while I got my treatment. After a few treatments, I started going alone. My husband would drop me off on his way to work and then pick me up on the way home. He works just a couple blocks from the hospital. My chemo treatments always took almost all day so this worked out perfectly. I'd have breakfast at the hospital and then check out the gift shop. By then it'd be time for my appt so I'd go to the infusion room and they'd hook up the IV thingy to my port and draw blood. Then I'd have my appt. with my Oncologist and he'd authorize my chemo... then I'd go back to the infusion room and settle in. After my first few treatments, they started scheduling me at the same time as another lady that was having the same treatments so we could chat. I liked chatting with the other patients the very best. Somehow, the shared experience made it seem just a little safer and not so scary. Ya know?
At first, people kind of stay to themselves, but once you get them chatting, they like to talk!

My Cancer Center had various pops, juices and coffee as well as snacks and soup. You could watch DVD's also. They had volunteers that came in and did various things like play instruments,give hand and foot massages, and there was even a dog, Freckles, who came to visit. They always had warm blankets which I liked very much... until the hot flashes set in!

Amy, I think the Scrabble idea is fabulous. That's my favorite game!

Anyway, I don't think the chemo nurses have any problem with you trying to make the best of the situation. My Center did have private rooms if you wanted to be alone or to have several people with you.

After your first few times, you'll know what to expect and can plan accordingly.

Hugs!

Doreen43

I started chemo on Oct. 4. I am having a severe skin break out on my face, upper arms, and back, as if I am going through adolesence again! I was wondering if anyone else had this reaction and what you did to help it. These breakouts feel like welts on my face! I thought chemo was supposed to dry you out, but my face is like a pool of oil. Any feedback would be helpful! Thanks

sherryhaire

I took my anti-nausea med 4 days then stopped I think I will take them longer next time or ask for something longer acting.

ake

i'm getting nervous for thursday for the first AC. I'm planning on shaving my head next weekend with my brother and my husband...any tips to shaving one's head? I have no idea how to do it. Also, I'm taking my wig to get styled...any advice for how to get it styled at the salon?

any last minute advice for the first treatment? eek!

thanks

-amy

AnnaM

Dear Monique:

How nice to find a quilter out there. Quilting brings me joy. I think I will go up into my sewing room today to look for some of that joy.

I'm starting chemo toward the end of the month. I have to recover from the surgery (bi-lateral mastectomy with reconstruction on Sept 14) and have a PET scan, MUGA and the placing of the mediport to get done before I start the chemo.

Good luck!

kapensy

Sherry - sorry you are having a rough time of it; Ruth - glad you're doing better!

I'm still doing okay - no major problems; my next treatment is 10-21, so we'll see how that goes.

Chemo room atmosphere? I will probably go by myself most of the time - but my chemo nurse is a good friend from high school - so I don't really feel alone; and I like just sitting and reading my book. I think though that you should take whoever and whatever gets you through!

God Bless to all!

Nancy-SanDiego

Happy Tuesday, Ladies. I had been thinking this would be a solitary journey until I discovered all of you funny, courageous and very informed women. I had a lumpectomy for DCIS on 9/29 and then path came back showing IDC, dirty margins, HERS-2 3+, so tomorrow is additional surgery and lumph nodes . I expect to start chemo the end of the month. So very glad I don't have to go it alone.

sherryhaire

Nancy-you will never be alone we never like to see new people have to join but know you are one of us now and prayers, hugs and lots of love will come your way

sherryhaire

To the quilters out there what a talent I envy you!!

jaslin

Hi everyone! I start my 1st round of AC chemo this Fri. I am so nervous. My husband and mom are going with me. I was wondering just how long the treatment lasts? I had to call the Onc today and ask for an anxiety med. Boy am I up and down these past few days! I think the emotional rollercoaster has sucked all my energy. And I used to like rollercoasters! Anyone been told to suck on ice chips while receiving chemo? I think it is supposed to help with mouth sores. Amy, you are brave to shave off your hair! I just don't think I can yet, though I know it will be traumatic when it starts to fall out in clumps. I too ordered some wigs from Paula Young. 4 of them- short cute styles I have never been able to wear since my hair is naturally curly. I am actually looking forward to receiving them!
Aimee

Serendipity

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Hi everyone! I start my 1st round of AC chemo this Fri. I am so nervous. My husband and mom are going with me. I was wondering just how long the treatment lasts?

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Hi Aimee,
My first actual Chemo treatment (last Friday) lasted about 2-1/2 hours, but I was at the Oncologists for about 4 hours the total to get blood drawn, get a review of meds I'm on, see the Oncologist and ask questions, receive the Chemo and then meet with a scheduler for future appointments. I don't know if everyone has that as a first time appointment, but that was my experience.

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Anyone been told to suck on ice chips while receiving chemo?

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My Chemo room has a water/ice machine and I did sip ice water and chew on ice during the treatment. I don't have mouth sores yet, but the nurses kept asking if I had a "metal" taste in my mouth (which I didn't) but that might be another reason to chew on ice--as well as relieve stress. I've been very anxious too. I'm a little less so now that I've been thru the first treatment, but I'm still having trouble getting to sleep at night--too much thinking!

Take care,
Jane

Serendipity

Hi Ladies,

This was day 4 after my first Chemo treatment on Friday, and I felt a little better, with a little more energy. I'm still moving kind of slow, but was able to do a couple of errands and a couple of things around the house--so I'm hopful I'm thru the worst. Although--I keep thinking about poor Sherry and wondering how she's doing.

I am still supposed to go to get 2 IVs of iron this week some time. The first scheduler called to say I could get both at the same time--which I thought sounded kind of odd--but then a nurse called back and said that wouldn't work. I'll need to go in 2 days in a row to get the iron IVs. I'm hoping my energy level will go up after that.
Jane

AnnaM

Dear Amy:

Thank you for the wig shop info, I went there and got a little wig that is much nicer than my real hair, which is too curly. I'd rather keep my real hair, but since that is not an option, I plan to have my head shaved. I don't think I can bear the thought of having my hair come out in clumps. I too don't know how to go about shaving my head. I plan to ask the person who usually cuts my hair if she can do it. I think I will take my husband; it has been good having him along every step of the way. He saw my bilateral mastectomy and reconstruction from the get-go in the hospital (4 weeks ago today) and has been very supportive. I think he is less shocked about my appearance than I am, and I need that these days.

Please let us know how your shave and first chemo go.

debbie444

I have my first chemo tomorow - to say i am scared is an understatement! My hubby is coming with me and we are going straight up after dropping kids at school.
Its been a long time coming as i had my op in May but had trouble healing - infection after heamatoma after seratome after heammorrage after infection etc...... I kept saying i was working towards chemo but secretly knowing i had the safety net of my hole so would not be happening soon - and now here it is.
Aim to hit it running with my high heels lippy and some stunning hats but still have moments when i feel 3 not 33!
Debbie

sherryhaire

It has been one week since my first AC yea!!!Although the first few days slowed me down I really only had one really bad day, have now found out there is a virus going around so I am hoping it was that and not side effect from Chemo, a full day of vomiting was not on my schedule!! Anyway I have developed white patches in my throat anyone?? What do they treat it with I will call nurse today boy I do not want mouth sores!!!! So far it seems all us first timers are doing pretty well considering so to the newbies it is dooable just know in spirit we will be beside you the whole time

sherryhaire

Today is my first blood workup hope counts are ok --jane let me know about the iron iv sounds like something I need

oldsambvca

First AC treatment was a week ago yesterday. Like sherryhaire, really slowed me down the first few days, although I have been lucky enough to not vomit! I've still got this terrible heartburn/GERD feeling, and the inside of my mouth has started to hurt - no sores, just hurts like sores are coming. My first blood workup was yesterday, and everything is low. Not so low that I have to confine myself, but I have to "practice proper handwashing and stay away from sick people." Sure hope that Neulasta shot I got last Wednesday kicks in soon!