I am starting chemo in July 07. Anyone else?

mominpa

Hi everyone, reintroducing myself...
My name is Karen, I'm 41, married mom of 2 boys, 5 & 2, we're in central PA. I have Stage II, grade 3 bc, had a mastectomy on 6/22, clear margins and nodes, started dose dense 4AC, 4T chemo on July 23. I had queasiness, fatigue, and headaches for 4 days with my first treatment. I don't think the Neulasta had any adverse affect, though. I took Kytril and Compazine for nausea.
I think the hair loss might bother me more than the breast loss initially, but I am trying to think about the new hair and hairstyle I will have when this is all over.
I have had some sleep problems, too...may try melatonin.

Karen

rspayne

Hi Karen,

Another Pa. person here...I'm up north, but have family in the Camph Hill area and also York.

Tomorrow is my second of 6 TAC. I awoke this morning, ran my fingers through my hair and it was comming out in tufts. I had previously gotten a very short punk like cut, last week, so there is not a lot to lose, but messy nonetheless.

So this evening after dinner, My 22 y/o son gave me a buzz, and then he lathered my head and shaved it. Bald is Beautiful. I seriously like my bald cut. My husband videoed and took pics, even took one with phone to send my daughter who is temporarily in D.C. so I could send it to her. She called and I could tell that she was almost crying, but being the Pollyanna that she is, said,"You look beautiful, Marmmy, I just have to get used to it!! Then I was crying.

My best to you, Rose

mominpa

Hi Rose - I am getting my chemo in Camp Hill! Good luck on your 2nd tx. Karen

lthigpen143

Karen,
My oldest daughter is in DC as well. She goes to GW and is interning this summer. Your story made me cry but I am so happy for you. It is clear that you have great kids. My 2 daughters are such a blessing through this. Just thinking of our kids makes all the surgery and chemo worth it. This is just one year in our lives and cancer does NOT define us!

roh50773

Hi Laura and Pat,
RE the course I went on I need to say first of all that it was in the UK not Ireland and is a charity - it doesn't come as part of our medical care here in Ireland. There is a website - it's www.pennybrohncancercare.org Basically they work on the fact that everyone has disorganised (i.e. potentially cancerous) cells in their body but that normally our T-Lymphocytes which are a type of white blood cell, work effectively to destroy them. when we develop cancer then it is because these cells have become damaged somehow. So what they are saying is that we need the medical treatment to get rid of the cancer but we also need to work on repairing our T-Lymphocytes so that they can start doing their job again. All the stuff we did - healing, visualisation, meditation etc, and particularly the diet, is designed to give these cells every chance of becoming healthy again.
The diet is a bit of a mish mash but it has been built up on 3 ideas -
1. To avoid any food where research has shown a link to cancer. Dairy products are the biggy here. I am however allowed eggs.
2. To avoid foods that put a strain on the system in general - e.g. sugar, salt, tea, coffee, alcohol.
3. To eat as much 'protective' stuff as possible - loads of veg and juices, preferably everything organic.

So basically I am off sugar, salt (which is probably the hardest for me - I can use Soya sauce or Tamari) red meat, tea, coffee (I still have one cup a day as I found I still had a headache 2 weeks off it) dairy foods and any processed food. i can have organic chicken, fish and eggs. Variety is the key - lots of seeds and nuts and different veggies. Quinoa is particularly good. They also suggest trying other grains as well as wheat as some people find too much wheat is hard for the body to process. But the biggest message was not to beat yourself up if you don't always manage it - it's really important to enjoy the food you eat otherwise it won't do you any good.
If you are interested you can buy a CD of meditations, relaxations, a DVD of the work they do at the centre and a food sheet from the website - it's 12.50sterling.
I do hope this doesn't count as advertising. I'm not working for them or anything!! This centre in Bristol has been going for 26yrs and is endorsed by many oncologists and Prince Charles!!!
Laura, a massage sounds great - they do quite a lot of that at the Bristol Centre. I personally find acupuncture good but of course it all depends on the person giving it. I am lucky to have someone I trust. I am not a good one to recommend ways to sleep - it is 3.30am here in Ireland!!
Best to everyone,
Asia

TINAMAE

Well ladies Wednesday I will have my first ct scan and bone scan, I'm so scared they will find it somewhere else even though all 7 nodes were negative of any cancer,I had my first chemo on the 23rd and will have another on the 30 of July,anyone know what the possibilities is of it being somewhere else?

Thanks Tina

lthigpen143

Asia,
Thanks SO much for taking the time to share your integrative med tips. It prompted me to search for (googled breast cancer + integrative medicine + Duke Medical Center)and find an Integrative Oncologist to go to. She also works at Duke (where I am going in North Carolina) but specializes in the whole body, mind, spirit. I will keep my other oncologist but will work with this new doc on diet, exercise, massage, acupuncture, vitamins, etc. I am SO excited! They even have a whole wellness program I can join. I go Thursday. I will let you know how it goes. I don't know WHY I did not do this a month ago but I want to thank you for helping me to finally get there. I hope it is all I want it to be.

Tina,
I am sorry that this scan has you concerned. The fact that your nodes were all negative should give you great peace. Think of all the women who do have a few positive nodes and, by a huge majority, still do not have a spread to other areas. I will be sending supportive thoughts your way.

TINAMAE

Thanks Asia, guess I just needed to hear it from someone else.

Thanks Tina

TINAMAE

Also anyone from the Little Rock, Arkansas area on here.

Thanks Tina

lthigpen143

Hi Rose,
Just checking on you. How did #2 go? Drink a lot of water and get up at night to pee every few hours. You don't want that stuff sitting in your bladder all night. Warm thoughts and well wishes,
Laura

lthigpen143

Tina
I think you meant Laura, not Asia, but I am sure that Asia as well as all the gals here would say the same.
-Laura

MLizA

Tina, I understand what you are going through in anticipation of the scan and the results. I came out of initial surgery with 11 of 13 nodes affected and uncertain margins so was immediately scheduled for a PET scan. I was worried sick before, during and then waiting for results. I came out clean, with no spread. You have tremendous odds in your favor and your doctor is just making sure to cover all bases. I know that there is nothing that will take away your worry but will be thinking about you during this stressful time.

My second AC TX is tomorrow, my hair is starting to come out in handfuls. Still don't know why it upsets me so, I guess before I could look in the mirror and pretend I wasn't sick... now there is just no denying it... But it WILL grow back, my breast won't ...

Good luck to everyone on getting through the week.
Linda

LottaQuilts

It's so nice to have all these people going through this together. Makes me think that I'm not a lunatic.

Tina - I'm sending positive vibes your way. We're all here for you regardless of the results.... stay strong!

Funny, but looking back at first we were mostly worried about SE of our treatments and now most of us know what to expect. Now it's the hair loss issue. I've been bald for 2 weeks now and I can honestly say that I'm tired of it already - I WANT MY HAIR BACK!!!

I've been moody and weepy and in a general "funk" the last couple of days over it. Nice to see I'm not alone. It gives me a strength to "put on my big girl panties" (anyone read that book?) and get over myself.

Won't it be exciting this spring when we're all comparing hair GROWTH?

Nice to be a part of the group....

Abbi

lthigpen143

Hey, Linda,
We are all on emotional roller-coasters and, to be sure, hair loss is depressing. I'm so sorry you are feeling down. You have every right to. I have something to say about the "being sick," though. -
You are not sick! You WERE sick and, as I understand it, you are cancer free and are just doing this "chemo thing" to STAY healthy. To ensure a healthy future. You are being pro-active in taking care of your health. The hair loss is not a sign of weakness or sickness. It is a sign of a woman who has kicked cancer's butt and is doing everything in her power to STAY healthy.
I know the difference is semantics but it is important to remind ourselves that this chemo is pro-active and is a choice for life and health. For many of us, the cancer is out (or will be soon) and the chemo is insurance.
So, while I dread the hair loss (any day now) I feel like it is almost a badge of courage and lets people know that I am a fierce fighter who is building a strong and healthy future.
You are brave and bald and are empowering yourself to be healthy. Believe it because it is true.
Take care,
Laura

TINAMAE

Ok ladies just got back from blood work and my wbc are way down,I had my neulasta shot on Tuesday after chemo on Monday, how long does it take to kick in, I'm really worried about this because the Dr said be careful stay away from sick people.

Thanks Tina

Marie853

Tina, not sure about the Neulasta. I had it 2.5 weeks ago after my chemo and didn't have to go back in for bloodwork. I guess it worked...I think my Onc only checks if you have a fever. This week is AC/Neulasta #2. 2 down..yeah!
Just came home for my lunch hour and to take that wig off. Yes, I miss my hair as well. Men and hairloss...now that's a topic that is unfair. I live in the Phoenix area and right now during summer, half the men have either very short cuts or shave it all off. Oh well....Abbi, I've been kinda under that funk about my hairloss, too. It must be normal. It is cool that we can share so much on here and help us to understand that we are not alone.
Thanks everyone!
Barb

rspayne

Tina,

I had my doc puzzled...the neulasta took a lot longer to get the numbers back up. I had neulast on a Tuesday, and bloodwork on Friday. The numbers were as they said dangerously low. But oddly enough I felt great. I had repeat blood work on the following wednesday, still low, but on the rise. Finally on Friday, everything was back to normal. So it took 10 days for my counts to get back to normal. Hope this helps. The nurse clinician said that the response time is a very individual thing!
Hope your counts are climbing as we speak. How are you feeling? If your feeling good, then it's probably doing its stuff, but the numbers just didn't catch up yet.

Rose

rspayne

Laura,

I got home from my tx#2 a little after one. I am now in hyperdrive from the decadron. I've been doing laundry, and getting dinner prepared. Other than the decadron buzz, I doing wonderfully. I'll probably be less peppy tomorrow, but still good. Thursday and Friday will probably be my rotten days(at least that was how it was last time.

I'm up to 50 oz. of liquid since treatment commenced. They suggest 96oz. So I have a way to go. Water still tastes good to me. Last time, after day 2 everything tasted salty, it was the pits trying to drink 96oz when the only thing that tasted remotely ok was some Fiji White Tea. I'm making some now with a little honey and a touch of lemon, and putting it on ice.

Linda and Abbi, Sunday my hair which I had cut very short in anticipation, started coming out in handfulls. When I put on a navy colored shirt and realize all that I was shedding, I decided it was time to do the dastardly deed. My 22 y/o son first gave me a buzz cut (out in the yard, while husband took video and pics. Then we went inside where he used a razor and shave cream. He was so very gentle and did a great job. I was sad but I figure after all i've been through it is only a minor thing.

Abbi, do you use a sleep cap? I slept with head uncovered and my head felt strange, sorta like it was wet, maybe sweating.

But just think of how much money you will save on shampoo, hair products, and salon visits! Not to mention the time saved styling and drying. I really like myself bald.

I wore a bucket style hat for my tx, today. It is cold in the tx room. I kept readjusting the hat. Oddly I opted to not wear a silk scarf because it's hot today and thought it would be too sweaty...go figure.

I'm eagerly awaiting a shipment of caps and hats that I ordered from headcovers.com

Thanks to all for caring and concern.

Peace, rose

kkelsey

Hello Barb,

Well I feel the same way you felt this weekend. I had my second treatment on July 24 and did really well. Never got sick or tired, but I decided to cut my hair on the 25th and then this weekend it just started shedding and it was making me crazy. I was very emotional on Sunday too!!! I finally asked my husband to shave it. Boy was that hard. My hair was really long and thick and to go from that to a buzz was hard. The hard part for me is that I am a Sales Rep and have to go out and try and get new business and right now that is something I do not want to do at all. I wish I had a different type of job.

Well good luck to everyone going for treatment this week. I will be thinking of you all and keeping you in my prayers.

MLizA

Laura,

Thanks for the encouraging words and the different perspective. I like your approach and need to work on adjusting my frame of reference. I appreciate your strength and motivation...
Linda

figsgirls

Welcome to the new ladies. Sad that almost every time I read this thread there is somebody new on board. Not sad to get to know you, of course, just sad for the reason...
MARGIE, I RUN! I was out on Wednesday for the first time since chemo began. It was really hard but it felt great to be doing it. I think the difficulty had a lot to do with the fact that it was hot and that I'd only run two other times since my first surgery May 9. So I'm optimistic it will get better. PM me if you want to talk running!

So today was AC #2 for me. I'm half done with the AC!! HOORAY! It went fine today. Around evening I developed a teeny bit of nausea and haven't wanted to eat anything but cereal and watermelon. Not bad, though.

I wrote in my last post that my hair started to come out on Saturday. This afternoon I could pull it out in clumps, so my husband shaved it down to a #1, then he did his hair as well. He followed up with a hand razor, so he is completely bald, but I wasn't ready to go there yet. Maybe tomorrow if a lot of my buzz falls out tonight.

I have to say that the shaving was not nearly as traumatic as I thought! I thought a lot about it ahead of time, so I think I got to a point where I just wanted it to be done with. The anticipation was definitely worse than the actual event. HOWEVER, I haven't been out in public yet. We'll see how that goes. Tomorrow for my Neulasta shot will be the first time.

After my tx was done today, I went to Stein Mart to return something, and they had a huge bunch of silk scarves for half price so they were $5.49 each. Very pretty. I got six of them. Although I think for the 3 remaining days of work I have (my position ended, but I knew it was coming) I will probably wear my wig. I don't think my students will even notice.

Somebody asked about getting their period. I got mine about 3 days after my first treatment. I definitely think it contributed to my level of fatigue. It always did in the pre-chemo days.

Here is a synopsis of my journey so far, for the new people:

ILC Er+/PR+, Her2- in left breast. We thought it was 1.3-2cm but lumpectomy on 5/9 showed it to be 4cm. Showed LCIS as well. 1mm micrometastesis in sentinel node, all others negative.
Dr. recommended LB mast. but I asked for bilateral because my cancer was lobular. Had immediate reconstruction with expanders 6/14.
Started chemo 7/16. 4AC every other week, then 12 weekly Taxol. I get a Neulasta shot the day after tx.
I'm 42, married 4 years on 7/12. My daughter is 20. Husband and daughter have been WONDERFUL.
Instead of having babies, my husband and I have pets - 3 cats and 2 dogs, all adopted as babies from pet rescue groups.

Donna

diag061307

Good Morning Everyone! I have a question about my upcoming hair loss, which seems to be all I can think about lately...Once it's gone, does anyone have a good sunscreen to suggest for both my face AND head? Not that I'm planning on leaving my head uncovered, but the sunscreen I started using on my face (neutrogena) made me break out, which is the last thing my self-esteem needs right now, so I'm wondering if anyone has any other suggestions. At least right now, I can sort of hide behind my hair when I'm breaking out, but in the next week or two, that's not gonna be an option! Any suggestions would be great.

FYI: I'm 38, single, diagnosed 6/13 with 1.4 cm in right breast, lymph nodes negative and e/p negative. Had my first chemo treatment (Cytoxan and Adriamycin) on 7/26.

LottaQuilts

Someone was asking about periods.

I was having my period during my first tx, so I expected that would be the last one for awhile.

Wasn't I surprized to wake up to a period last Sunday morning? What's with THAT? However... it only lasted 2 days. Maybe that's the end?

There has to be some advantages to this darn treatment, right? I figured I'd at least get to skip a few months of dealing with period stuff!

LottaQuilts

Oh... Rose.. you were asking about a sleep cap.

I do have one and I wore it for a couple of days to catch hairs when my hair was first coming out. Now I find it more comfortable without. Seems cooler. I'll probably be using it when the cold weather arrives though.

gshoemate

Good morning ladies, hope everyone is doing good.

I had AC #3 yesterday....Yes!!!! Only 1 more AC then on to Taxol that my doctor swears is easier then AC...as long as I take my L-Glutimine. I don't know why I am still nervous going into the treatments. I guess I am just waiting for my body to surpise me with a new side affect, but nothing eventful happened. In fact I was done faster then my last 2 treatments. We ran to Wal-Mart afterwards to get a prescription filled and thats when my pesky headache set in. So I can expect to have it until Friday, I think that is my worst side effect. Now I'm just waiting for the quesiness and sleepiness to settle in. I go for my neulasta shot this afternoon which I dread because it make me feel terrible but whats a girl to do.

Sending hugs out to everyone with treatment this week, one more behind us, one less ahead of us!!

And Laura, your post made me cry. Sometimes we all need a reminder that we are not sick, we are doing this to make sure we are not sick in the future.

Hugs
Ginger

Marie853

Congrats Ginger! This will be me after AC#2 tomorrow morning. Yeah!
As far as the sleeping caps go. I tried to wear one, but it's kinda like socks. When it's cold, I try to wear them, but sure enough sometime during the night, they come off. Same thing with the sleeping cap. I'd rather burrow under my comfortor if I get cold.
I'm actually getting used to my hairless head. In fact, I've worn my hair long for quite sometime. I think when it comes back, I will keep it in a short style. May even act my age (47) and let the grays show through...NOT!
Oh my goodness..just read that Robin Roberts from "Good Morning America" has joined us in our fight. Shedding a few tears & saying a prayer for her now.......
Take care everyone,
Barb

katedevi-2007Feb15

Hi Asia and Gagal and all the new Women here,

Finished tx 3 AC yesterday after coming back form our cottage on Horseneck Beach. As usual the first week after treatment 2x was a bit of nauseous washout....but that is ok. We are trying to fi'g out days 5 and 6 as those days may be effected by my companzine intake. It may also be from Zofran so that is next in line to check. They have switched me to reglan in hopes of getting rid of the spacey/anxiety fueled feeling that happens. It does not appear to be caused by the steroid which I already halved during treatment 2 Anyway, the hair was buzzed shaved off the Monday night of vacation and it feels great. The worst part is not the losing the hair it is the hair getting EVERYWHERE. "Basta!" I said and got the clippers out. I love No beach hair to worry about and I have been carefully coloring my face and head up a little with lots of sunscreen. One that really seems to do a good job is the clinique city25 which I use on face and head. Don't forget to wash your face and scalp and puts LOTS of moisturizer on it. Also hands and feet, the super duper on that I like is actually for pregnant bellies....Mama Bee's Belly Cream from Burts Bees. I kind of like walking up the beach with not hair and my big earrings as I am tall there is no where to hid. People either think that I am sick or some eccentric rich lady with big earrings. I almost all cases people have been really nice about it.

Abbi looks lovely bald I must say and I look better that I thought but that is with eyelashes in tact. I will post some pix on my
picassa page when I can......before and after!
A word on buying your caps and stuff. Wait until you actually are bald to go gangbusters. Get a few bandannas and then go and try things on. Some of the things that I ended up buying beforehand were WAY too big for my small head and made me really look like a sick person. Right now I have like 4 faves that I like to wear and had to bring the other ones back. For me bright colors are a must with pale pink being the kiss of death!

Asia, it sounds like the program is very well put together. I was strict Macrobiotic(no dairy no meat, very little fish) for about 15 plus years and ate no dairy for most of my life ...but I have to say that on chemo that yogurt may well help people with heartburn and give back some normal flora. I have found it to be helpful now. Especially in the 2nd week post treatment. Keeping Calcium up is also important for this time as well which can also be gotten in supplements. It is nice that we can get organic yogurt and cheese now....rGB is not good for you!
In looking at the studies of the Cancer rates of women in Japan, the common knowledge back in the eighties was that this was from high Soy intake and from high Fish intake.We all thought that Soy was the best thing to keep cancer away but now maybe not. Now people are paying attention to the amount os soy that is ingested by young women especially in their early 20's as a possible link to Estrogen positive breast Cancer later in life which is just maddening.
My acupuncturist Dr. Lu says not to eat to much of it and as usual dietary studies are just really hard to make sense of sometimes. So far the acupuncture treatments have been very helpful in dealing with SE's, I would recommend them and as always massage! Yay for vegetables too....am enjoying fresh corn and tomato salads to no end. (When not nauseous that is!)

I have some questions for people that have to do with lifestyle that may seem out of the blue but want to ask them:

1. Has any of you spent alot of time in a chlorinated pool doing lapswimming or the like?
2. Has anyone made a habit of freezing water in plastic water bottles for later drinking?


Wishing you all well on your journeys~

~climbergirl

figsgirls

OMG Climbergirl, I laughed out loud when I read your comment about people thinking you are some eccentric rich lady with your big earrings!! We have insulated water bottles which keep the water cool for a really long time, especially if you add ice. So I fill one with lots of ice and some water and carry it with me everywhere. It really works well for the car, because it doesn't get warm.

Abbi, your report of getting your period again so soon made me sad! I had mine the week of my first tx and was hoping I wouldn't get it again! We'll see, I guess. Although mine normally lasts about 1.5 days, so if I get it again it might only last a minute!

Ginger, I also have headaches as my worst SE. They felt very much like sinus headaches. Yesterday at tx #2 the chemo nurse said it is probably from the Cytoxan and to try taking something for sinus. I'm doing Tylenol Sinus and so far so good.

I got my Neulasta shot today so I am officially halfway through my AC!!!!

Donna

lthigpen143

Ginger and Donna,
I am having headaches as well. (That and difficulty sleeping are my two big SEs)
My Dr said to try taking a Claretin-D (I take the generic) every morning. I am on day 3 and it is really helping.
Still can't get a good night sleep without Lunesta, though.

liven42day

Hi ladies,
Laura your words of inspiration are wonderful, thank you. For our July chemo ladies I had my 1st AC chemo July 30, Neulasta shot yesterday. Thank God for the port that I dread looking at. After chemo I had the feeling of a hangover and about 4 hours after I was really nauseated and quessy with a headache. My fiance cooked dinner and I couldn't stand the smell, I went to bed. Slept ok for 3 hours then awake most of the night, hot and cold continuously. Next morning my duaghter took me to the surgeon for 1 week port check-up. They said all looks good but I may be developing lymphedema. Neulasta shot then home and fell asleep, strange sleep patterns we develop eh?
They gave me Decradon and Zofran in my IV b4 A, I had already taken an Emend b4 tx. Then they gave me the cytoxan and sent me home, Zofran every 8 hours and Emend every morning. I asked the Onc if the first tx is the worst and he said everyone is different. Well ladies we will all hang in there together! I am so glad that I have this support group to read and comment on, thank you all. Charlene in NE PA