Starting chemo Sept 05

mona12879 · September 2005

My mom just started chemo this weeek. Her tumor was 2.5 cm and had 11/20 nodes +. Her mastectomy was done almost a month ago exactly. She is doing 4 FEC+ Herceptin and 4 Taxotere+ Herceptin, one dose every 3 weeks. For the first dose, she had Herceptin the first day and the FEC the 2nd. Every other time she will have them all together, they just wanted to see how she tolerated the Herceptin. She goes for her Nulasta shot today. So far, she seems to be doing good. Her doc. gave her samples for nausea (can't remember the name, starts with a K) as well as Ativan and Maritol. So far she hasn't had to use either of those but it hasn't even been a day yet. I am hoping she goes through this with as few side effects as possible and hope the same for everyone else going through chemo!

joriesmom · September 2005

Hi All,

Glad I found this site. Looks like I will be following along with you Sept gals if that is ok. I was diagnosed with IDC and had a lumpectomy on 8/24. Tumor was 3cm, er, pr, and her2 neg. Clear margins and clean nodes first time around. Met with onc on Monday and I will be doing ACX4 & Tx4 dense dose with a variety of other meds for nausea etc. Sounds like I will also be getting neulasta. I am going to get my port put in tomorrow morning, MUGA scan next monday. Don't have a definite start date yet but should be soon.

I will have my friend cut my hair really short sometime between first and second cycle of chemo. Hope my journey goes as well as many of them I have read here.

To those of you who are hitting many bumps in the road - I am sorry and hope things ease up. Too many things to worry about.

BTW, besides this board, do you participate in any formal support groups. Many days I feel awful worrying about the future if you know what I mean? Thankfully I have a supportive family, wonderful husband, busy kids and decent insurnance. At least I don't have to worry about all the support stuff.

Best of luck to you all.
Kris

Constantlyhope-2005Aug10 · September 2005

I will be joining the Sept 05 Starting Chemo Club...it all seems so surreal. Everyday this week except Labor Day I've had doctor app'ts. Today I met with my surgeon who said everything looks good from the axillary node disection and cleaning out the margins (2nd surgery). We made an app't for Feb and I felt so free--as if I have a long reprieve from this whole "Cancer World." Then this afternoon, a nurse called from the onc's office to schedule a muga scan and to have the port inserted. Suddenly I'm jolted back to reality and I'm scared. I feel like a frightened child at the prospect of everything and I'm so glad I can confide my fears here. How can I take care of my family if I'm sick? How can I deal with a fractious 4 yr old when I'm sick? I know I will. I know I'll find the resources either inside or that my husband and teenager will help, but it boggles my mind how I feel so normal today--not like a cancer patient, I should say; yet, I know that very soon--next week, my whole world will be different. It's almost like a prisoner preparing for lethal injection. And I know that it's to benefit me and that it will search out any stray cancer cells and kill them. I know this. But I'm just dreading the whole chemo thing. It used to be the hair, but as far as I can see, being bald is just the tip of the iceberg. I "know" I can get thru it, but I'm so frightened. I want to crawl in a hole and hide from reality. It's too surreal. I've been thinking how I already appreciate life. I appreciate the everyday predictability of my life with my children, my husband, my pets. Why do I need extra lessons?I don't know--when I realized I would have a port put in on Monday (and 2 months ago, I didn't know what a port was), everything just came crashing down and the tears flowed. I went to my 13 yr old daughter who was chatting with friends online while doing homework. She seemed so happy, so full of life that I couldn't face depressing her with my reality. My little one saw my tears though and started kissing me, covering me up and finally she said I'd feel much better if I played potato heads. You know what? She was right.

I can't say what regimen I'll be using as I'm enrolling in a clinical trial and won't know which arm until they receive the results of the muga scan/ blood work. I'm also participating in a JohnsHopkins Nurses' study on the effect of exercise on chemo/ radiation related fatigue. Right now it just asks me to walk 1/2 hr daily and keep a pedometer on. Well, good luck to all my September Sisters and keep posting all your hints and experiences.

monkey9cats · September 2005

I'm not sure I'm even doing this discussion board correctly LOL. If I'm not please let me know. I called my surgeon today to find out exactly what happened with my port surgery yesterday. He did say I had an allergic reaction to something they put in my IV. He called it something that started with an "A" but said fluid was leaking out of my veins and caused everything to swell. Eyes, face etc etc. Now today I have HUGE swelling on the breast that had the lumpectomy all the way to where I had the nodes removed. He seemed to think that will go away and it's because of the fluid that leaked yesterday. He said they had to hydrate (sp?) me alot. If the swelling isn't better tomorrow I'm going to call him again. He does want me to go see an allergy doctor so it doesn't happen again. I just hop from one problem to the next!!! Us women are STRONG though and can handle so much!! Just hope that the chemo drugs don't leak out of my veins!!!!

susan_02143 · September 2005

Wow. I look away for 24 hours, and this thread has grown! welcome to Trenna, JoriesMom, Mona and Constance.

There is no way I can relay all that has transpired between yesterday at 9:30 am when I arrived at the hospital, and 10:00 pm tonight. So much.... I do have a blog that I am keeping up to date. I would be happy to share this URL with anyone who is part of our September Soul Sisters.

Here goes a try with the abbreviated version. Before going to the infusion room, they took blood and Nurse Jenn [she is wonderful!!!] did a thorough exam. We had a moment of panic since I have a rash which is, can you believe it, shingles! This brought a visit from Dr. Roger, my Onc. He felt it was healed enough and they decided not to delay the chemo. So I began popping my medication: Emend.

Once in the infusion room, I was introduced to my Nurse Oncologist, Dr. Judy. One of the great things about this hospital is that I will have the same nurse every time I go in. Got more drugs through the IV [I don't have a port], and then they began the A of the A/C. We had to slow the push, and then onto the Cytoxin.

Done! We went down the hallway to the special Oncology shop to look at hair. I was high as a kite, and actually had a lot of fun choosing a wig.

Had some nausea that night, but nibbling on some food seems to help.

I am finding that I need to eat every two hours. I am only able to eat a few bites at each sitting however. Todays grazing:
1. 5 bites oatmeal
2. cup fresh peach smoothie
3. 4 bites lemon poppyseed cake
4. chicken thigh and basmati rice
5. tried a sorbet, yuck, now doing another smoothie

I am sticking religiously to my drug regimen. I am having some short-term memory issues, so I have started a journal to ensure that I am drinking enough liquid, taking my meds, and noting temperature.

I had my neulasta shot today. No pain during injection, and none in my bones yet. Did feel some aches so went for a walk. Usually I try to do 2 miles, today I only managed a little over 1.

I am tired, and my brain isn't working right [decadon, I think.] However I am feeling blessed that I am doing as well as I am. Next posting to respond to other postings.

*susan*
who is heavily drugged and maybe making no sense.

susan_02143 · September 2005

With my brain disconnects, I am having to take notes to keep up with everyone's name and issues. Please forgive me, if I make errors.

Trenna, what a long road you have had. I don't know what energy level would be normal after your surgeries and illnesses. But I wish you the best. Welcome.....

Tina, another block in your road! I hate the waiting the most as well. Waiting for my surgery just about drove me nuts. Someday I would like to know how they could 'miss' the tumor. Sending you some smiles to keep you going.

Anne Marie, I have been taking 3 stool softeners per day at the suggestion of my Nurse Practioner. I also have laxatives ready just in case. This is a very common side-effect and can become very troublesome. You might want to call your doctor or nurse for some of their thoughts. You are sounding, well, really stressed. You are a chemo-patient, and so your reality will change. I don't know you well enough to know what you can let slide, but something is going to have to give. Can you create a food-delivery schedule with close friends for a period of time? Can you afford to hire someone to help clean your house? What can your children realistically do to help? I am sure that everyone here has more dust than they like right now. Be nice to yourself. You will heal better, really.

Diane, I missed your start. I hope that you are doing as well as I am, without the speedy stuff I have! Nothing I can do to be helpful about preparation now. I read the previous Chemo-Month postings to glean everything I could. Hope you are feeling well.

Cheryl, you have had one nightmare after another! I can't tell if you have a port yet or not. I was infused by IV, and it was okay. I had a fabulous nurse. If you feel pressure in your arm during the push, let them know immediately. They can slow it down so that there is no discomfort. You are one resliant woman!

Peggy, glad to hear that you are back home and that it was a false alarm. How are you doing otherwise?

Kris, so sorry you had to find us, but welcome. Your protocol sounds very similar to mine. As you may have read, I have already cut 14" of hair. Next three inches will go before my next infusion. When I feel the tingle, I will shave. Though many women I know throw a party, I am going to do this quietly with just my husband. I have not joined a local support group. Though I think it would be useful, the meeting time is extremely inconvenient. Instead I have created an online group of friends, like this one, to get what I need.

Constance, welcome... I am so glad your found this thread. I have enjoyed getting to know you in the open chat room. I have so many ideas about family, etc. Like you, I was living the life I wanted, exactly. Cancer isn't teaching me much that I didn't already know. But, what choice do I have? This is a random disease, and I am a random recipient. How old are you? There are some resources that could be helpful depending. Take care of yourself.

I am sure I have missed something... can you tell I am not good at minimalist writing? :-)

*susan*

prayer · September 2005

I am reluctantly starting tomorrow. Can't believe it actually came to this. I am very anxious about tomorrow as I sit here. Will be having 4AC. Hate to state the obvious but I hope it goes ok.

foxxf · September 2005

Sorry it has taken so long to get back to you all. I have been running from one Drs App to another. This post will probably be a little more detailed for those who havent been there yet.

I had my first app with the oncologist wed 7th. There was a traffic accident on the Highway between where I live and the Next town where the Dr is (65kms away) and we had to sit on the side of the road for 2 and a half hours waiting. Lucky we had left home a little early and we were only 1hr late for the appointment. We had to wait awhile but the Dr saw us anyway.

My husband came with me when we went in and the Dr first explained the pro/con debate of Chemo and then the side effects.

He had received a more detailed path report than the one I had from the surgeon the results were

Invasive Duct carcinoma, grade 3, 2.4cm, infiltrating border, Excision appears complete, 11 lymph nodes removed 4 positive. Er/Pr extremely positive, Her2

I am to start chemo on 23rd Sept, with 4 x Adriamycin/Cytoxan followed by 4 x Taxol then Tamoxifen After a rest period It will be off to Sydney for Radiotherapy.

Sydney is a 5 6 hr drive from where I live, there is lodge style accommodation for the patient and one support person, no kids allowed. I will have to be there for 5 6 weeks. Its heart breaking to think that I will have to leave my children for that length of time.

The Dr mentioned that one of the side effects of Chemo is that some women can become temp or perm menopausal. He asked do I have children (I have an 8yr old Girl and a 4yr old boy) and if I was planning on having any more. I said no we dont think so and he said that since the Cancer was so strongly hormone + that well take the ovaries and make you menopausal. I am 33yrs old and while we had pretty much decided not to have more children I am not quite sure we were ready to have that option taken away permanently.

So looks like I have some thinking to do

I have been sent for some staging tests which are an abdominal ultrasound, chest X-ray and bone scan as well as blood work prior to Chemo. I also received a script for the anti nausea meds.

After looking around on this site and hearing lots of stories about how great they are I asked for a port to be put in. That will be done on Wed 14th under general anastatic.

So as you can see I have been run off my feet. This week I have been to Port Macquarie (next town) twice and will have to go twice next week, then back for chemo the week after and for every treatment after that.

Hope you are all doing well
Best wishes,
Nicole

foxxf · September 2005

Oh in all that fuss I forgot to mention that I had my very long hair cut very short.

I can't say that I like it but with in a few weeks it will be gone and I won't have to bother with it any more.

Also got a great hat on special for $3. I love a bargain.

chat soon
Nicole

Pegk · September 2005

Good morning
I have to say that since Tuesday I have felt more like my old self than since before surgery in July (in spite of my trip to the ER). My energy level is good and I'm sleeping better.
My major anxiety now is my younger daughter(almost 16). I came across her weeping last night about the futility of life. She has been treated for depression since she entered puberty 2 years ago with extreme hormonal mood swings. She has seemed so happy lately with lots of friends and motivated in school. She's got an overwhelming amount of compassion. She joined a school club-Youth Against Cancer. I think she has been internalizing a lot of worry about me although I reassure her all the time that I'm going to be fine.It's unfortunate that what we are going through also has to affect those we love.

Prayer, I hope your treatment goes well today.
I hope the rest of you who started this week are having minimal side affects. Remember eat frequently, but lightly,plenty of water,Tums help, so does colase. Rest when you need to and next week will be better.
Peggy

susan_02143 · September 2005

Peg,

I hate what this is doing to those I love the most. As much as I miss my daughter now that she is at college, I also think that this is a gift to her. Lauren is terribly anxious but she doesn't have to endure watching me on a daily basis. I can filter the information she gets.

As it happens, I am doing well so far, and so filtering hasn't really been an issue.

I have tried to stress that her Dad's job is to take care of me, while her job is to be Lauren. Harder to pull off if you are a single Mom [dont' know if you are or aren't] and with your daughter living at home.

Even when we are sick, we are the emotional caretakers. So much to manage. Let us know if we can be of any help.

*susan*

susan_02143 · September 2005

Nicole,

Lots of information for you to get through there. Are you considering by-passing chemo with your dx? Of course, each of us choose our own course, but if that were my dx, I would ask "can I start today?"

Staying away from the children is hard. Any way you could house swap with a family in Sydney? Or rent a small house so that the children could come visit?

Hmmmm.... rereading, it appears you are going forward with the port, so you must have made your decision to go with the chemo protocol.

Let us know how the port goes.... and I will be thinking of you.

*susan*
still on a decadron high

hopeful1 · September 2005

Hello again! I had my first treatment of A/C on Wednesday - and I have to say it was much easier than I anticipated. I was given Aloxi and Decadron in my IV for nausea, and I have not had any as of yet! I got my Neulasta shot yesterday, and I'm not feeling any side effects from it either. Maybe it will hit me later - but right now - I feel great. They did give me Compazine if I start feeling sick - but I have not needed it yet. I wanted to thank everyone on this board for getting me through this first hurdle of chemo. Knowing what to expect made it so much easier. You are all amazing.

Poppy · September 2005

Hi Ladies!
I'm in the July group but I wanted to pop in and wish you all well with your treatments. I know the beginning is daunting but I am now looking at my 5th of 8 treatments (just finished 4 dose dense A/C and moving on to taxol on Tuesday) and am living proof that it is doable and you will get through it! The time will pass before you know it.

I don't know about neulasta, I get neupogen, but the WBC shots are a miracle. My counts are actually higher now than before I started chemo! I went in at 5.9 and was 6.4 two weeks ago. Get the shot(s). Also make sure to keep tabs on your RBCs too. I started on the shot to boost those when I was barely showing signs of anemia and that count has stayed high ever since. Something I didn't know until #3 was that if your WBC count drops, you will still feel healthy. So until you know for sure, be sure to wash your hands faithfully and stay away from people with colds. Once you start taking the shots you will relax a lot. I just caught myself eating with hands that had just been on a Wal-Mart cart the other day! lol I freaked and stopped eating until I'd washed, but 'forgetting' was a nice feeling. Makes you feel normal again!

If you need any advice or are wondering what to expect, feel free to pop in on us and ask. Hang in there! I know you'll all do just fine. Chemo is (usually - mostly) not the hell that we expect it to be. It ain't a picnic, but it's definitely doable.

Hugs!
Erica

skibug8 · September 2005

thankyou. the staff was very helpful when i did get there. i just wish they had someone prepare you before the day you start.

monkey9cats · September 2005

Peggy
Yes I did have the port put in on Wednesday. That's when I had the allergic reaction to whatever they used for the local. I ended up going back to my surgeon yesterday because I was freaking out with the swelling, my throat had like hives in it etc etc etc. He took my bandages off of the 2 incisions from the port (because I was afraid they had gotten infected) and said they looked great. WHEW!! Boy they sure put the port in a bad place. Hope I can use my seat belt OK. Why is it so big? I thought it was going to be a tiny thing about the size of a nickel? It rises about 1/2" or more above my chest & the tube you can see running up to my juggler. Could that be swelling? Geez I sure hope none of my BIG kitties pounce on my chest!!!! I decided to change my 1st chemo treatment next Thursday to the oncologist office next to the hospital because of the reaction I had to port surgery. That way if something weird happens the 1st time I'll be close to the hospital. The way my lucks running I'll have a problem LOL. They have 3 offices & if I do well with the 1st treatment I'll make my 2nd one closer to home to save me an additional 1/2 hr drive. Boy I sure have a bunch of good friends though. I feel so bad that I have to call on them each time I need to go somewhere. I can hardly wait for my daughter to get here to help me through these things. She'll be down for my 2nd treatment. Sure wish she could have been here for all these surgeries I've been through. With her help and all the help from the SUPER people that are in this room I WILL get thru this!! Everyone is GREAT in here!
Cheryl =^..^=

susan_02143 · September 2005

Cheryl,

Sounds like you have made some practical decisions that are making you comfortable which is great! I can't comment on the port since I didn't get one.

One step at a time, I guess.

I continue to do well after m first A/C. Today is my first non-Emend day so we will see how that goes.

Take care,

*susan*

Pegk · September 2005

Welcome Skibug,
If you've been reading our posts, you'll know that we all have our ups and downs with treatments, but this is a great way to put it in perspective, compare notes, get some idea of what to expect, and even come up with some good questions to ask your doctors. I hope you are doing well after your first day of chemo.
By the way, do you live in ski country? My husband was a ski instructor at a small mountain about 5 miles from where we live in the Lower Hudson Valley until he threw his back out last year (not skiing). I enjoyed skiing, but I was never very good.
Peggy

Pegk · September 2005

Cheryl,
You've really been through a lot. My port, although they had some trouble putting it in, is doing fine. It looks kind of like a gumball under my skin just below my right collar bone toward my shoulder. No tubes are visible. Sometimes it feels a little irritated as my top rubs on it, but I think that will diminish as the insertion wound heals.
It sounds as if you have some really good friends. Don't worry about relying on them until your daughter arrives. I'm sure they're happy to help. You'll be there for them when you are feeling better.
Peggy

skibug8 · September 2005

Peg,
I have one son away at college and one who is at home but also going to college. I just started chemo on the 8th. My younger son who is away is having a hard time with it. We lost a cousin to breast cancer a year ago. That keeps bugging him although I have explained that mine was caught early. My older son is keeping everything in. He is bipolar and not taking meds. So far he seems ok although his demeanor has changeda bit.
I am a single parent. It is hard to depend on others for all I have to do. However my closest friends and my aunt and cousin have been very helpful.
Good luck to all.
Diane

skibug8 · September 2005

Yes I do live fairly close to ski country. I am a fanatic. II live in southern NH. My youngest son competes in snowboarding for Waterville Valley. Last April he competed at the nationals in Colorado. What a great time we had. I would like to think that I will ski this year but my treatments will be lasting into the end of Jan. followed by radiation. My son is going to Plymouth State UNivcersity so that he can continue to compete.
Diane

prayer · September 2005

When does the pain from Neulasta start? Anyone know.

susan_02143 · September 2005

Prayer,

I started to get some bone pain today [day 4] but took a walk and it went away. Will let you know if it returns.

take care,

*susan*

Pegk · September 2005

Hi Prayer,
I think bone and joint pain are a possible side effect of neulasta, not definite. I had my shot about 1 1/2 week ago and have had no pain at all. I don't know if the effects are cumulative with each succesive treatment. I'll let you know. I'll be getting my next shot this week. Perhaps there's a thread dealing with this, or you could start one.
It's kind of interesting that we're all dealing with the same thing, but our experiences can be so different. I hope you're one of the lucky ones with minimal pain.
Peggy

skibug8 · September 2005

I had neulasta on Fri and am beginning to get bone pain tonight. However, I have rheumatoid arthritis so I don't know if that makes a difference. I had a bone scan today and had to come home and go to bed for a few hours. I feel less tired tonight.
Prayers for all.
Diane

tinkermax · September 2005

Hi everyone
I had my Groshong catheter put in on Friday, and like you Peggy, they nipped my lung. They kept me in hospital Friday night, then Saturday morning they x-rayed it again and it was 2/3rds deflated (so thats why it was hurting so much!)
A doctor aspirated it(I had a huge air pocked between the lung and the rib ) and the paid eased considerably, but they still wanted to keep me in overnight again so i have only just come home today.

On a positive note, the port itself looks fine, and with this type it only needs to be flushed once a week.

I start my chemo on Tuesday (FEC every three weeks x 8)and
I'm hoping this will go ahead without any problems.

Have a good weekend ladies, I will let you know how I get on with the chemo

Maxine

susan_02143 · September 2005

Acne anyone? I seem to breaking out with pinsize whiteheads all over my face. Whatever remaining dignity I might have had, is slowly disolving.

On the other hand, I am on day 5 of my first chemo round and am tolerating the drugs reasonably well. For this I am eternally grateful.

Take care,

*susan*

tornadogirl · September 2005

Hi. I will be starting AC chemo on Sept 15th. I hope I can be calm like you all have. i am glad no one here is having bad side effects yet, it gives me hope.

Good luck all of you.

nmherr · September 2005

Hi Chemo friends
I am starting my chemo 9/13. I had a bi lateral masectomy, but only had cancer in my right breast. It was a great dicision for me and relatively painless. I am thin and it hasn't worried me about the appearance and I think more convenient than only having one left. I made the decision after several friends complained about choosing to do only the cancer side. I got my port in no problem except pain which I am pretty tolerant. I had Hodgkins 17 and 13 years ago. The first time radiation ( didn't work)and my lymph nodes under my arms were taken at that time or killed by the radiation.Tthe secodn time I had chemo. I had adriamicin and cytoxen plus two other harsh drugs 6times every 3weeks. This time it is epirubicin and cytoxan 4x every 2 weeks and taxol or taxatere 4x every 2 weeks. I think this is a lot quickly and am worried about being sick for 4 months straight. I should be getting the neulasta but it seems that won't be perking me up very much. I have dealt with the wierd psychological upsets before but I am anticipating a hard road.

nmherr · September 2005

A positive note is I have had a relationship with my oncologist for 13 years. I know he is very smart and up to date on treatments. He knows my life history and I feel confident making decisions with him. Another great thing is my church family who is praying for me and lending support if I need it. So even though I am dreading the chemo I am finding blessings every day and that is truly wonderful.

Starting chemo Sept 05

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