Starting chemo Sept 05

nmherr

Welcome Joanna.
We are glad to have you come and post and ask questions. Sounds like you are right up to treatments with most of us. We like to support, question, occasionally whine, and mostly make new friends with other women. Hope you are doing ok in treatments and if you have any questions just ask. We love to answer questions it makes us feel smart.

nmherr

Oh Calico
I know the feeling of hating things on your head. I now have, 11 wigs ( all free from other people and I only wear 1 great 1) 4 cotton doorags ( too chilly for the cooling weather but light and I like them) 1 stretch du rag with a long tail ( I find this comfortable but cool) , 4 ski hats (cozy warm but the tightmess irritates me if I wear them too long) and a very soft scarf I can tie around my head (it slides allover the place).
Yep I have my bald head covered nicely IF I WANT IT COVERED but I usally want to 'fly free'. I was getting disgusted with all the Breast Cancer awareness stuff for sale and have decided " I am Breast Cancer awareness" Therefore everyone, but my son, gets to see my bald head. I like the idea of painting a pink ribbon on the back to show my support. I would get dumb blonde jokes from a close friend who is in his 70's and I told him now we swap bald jokes. So do what is comfortable for you and others will get comfortable with it. Except my hubby who told me he hated my bald head and my son. I respect them enough to try to make it easier on them. The rest of society is in for BC Awareness.

nmherr

Speaking of wigs, most insurances in us will pay for a wig, or partially pay. I got my favorite for free from my local Cancer Society. My favorite wig has a mono filament area on top. It shows my scalp through so I can style it different ways on top. It seems lighter than any of the other wigs I have so it isn't so pressing on my head. If you are shopping for wigs inquire about this style. Try calling your local Cancer Society.

nmherr

Cerridwen,
Hello and welcome. If you are getting vincristine it is a drug that stops cancer cell growth. It also makes it hard for the cancer cells to fix themselves. It actually comes from the peri winkle plant. It is an Antimiotic agent which robs the celluar genes of the ability to reproduce themselves.
Ok so don't think I am smart I went to the very top of this forum On the right is (First time guess, Site Map, Dictionary) I clicked on dictionary went to V and looked it up. Ray Romano actually says the word and meaning if you want. Then I went to a 'thread word I think it was Classes of Drugs. Basically I told you what it said. With chemo brain I had to cheat. But it did make me sound impressive at first HUH? This site has a ton of resources.

susan_02143

Norine, you sound brilliant! Welcome Joanne.

I am off to my fourth A/C and can't muster much enthusiasm for this last treatment. Hopeful, will be thinking of you today as well.

*susan*

txred9876

Good luck on your last treatment susan!....I have 3 down...3 to go.....

Am I the only one doing 6?

Tina

tinkermax

Hi Tina

I'm doing 8 treatments of FEC, (and I didn't have any positive nodes!) stage 2 grade 2, I won't be finished until Feb.

At least I dont have to do RADS!

Maxine

txred9876

Maxine,

I remember seeing that....may this chemo brain stuff sucks....LOL

Well the first phase...the 6 dose dense will be done late nov.....

Now that I am not hurting....I am not sure if I am going to do bilateral mast....but I know I at least have to have one...

How hard was it to recover from the bilateral mast?

Tina

susan_02143

Today didn't go as smoothly as normal. Met with Nurse Jenn, and she did a great job of answering all of my questions. Turns out the open sores that have appeared on my torso are again yeast gone amok. I have a prescription for a powder which should clear this up quickly.

Headed to infusion, and it was clear that they weren't ready for me. I sat in my chair, and waited, and waited. Nurse Judy ran by throwing out an apology. When she returned she heated my hand, and the inserted the IV. Not too bad going in, really uncomfortable though. I could feel the decadron and saline solutions very distinctly. After she slowed the drip, I could feel it but not as much.

Then more waiting. The pharamcy had more orders than hands to fill them. Finally my drugs arrived and Nurse Judy with a colleague did the full dispension protocol and it was time to push the Adromyicin. Nurse Judy knows to do this slowly on me, and still it didn't feel good. I indicated what and where I was feeling, and she shook her head. We need to find another IV entry point. This is too dangerous to continue.

And so she ended up using the last spot on my hand, the outer part of my thumb, down by the wrist. Okay, lots of nerves there. Man did this hurt! But when she started pushing the A, there was no discomfort at all.

Because of these delays, the total time at the hospital was 5 hours; a very long visit! During the cytoxin drip, I actually slept, and at the end I felt dizzy and well, like a chemo patient. We skipped stopping at the grocery store, which we have always done in the past, and went straight home.

I also must look like a chemo patient since people consistently opened doors for me on our way out. This never happens at this hospital.... well not to me before anyhow.

My mantra is "get to Tuesday" and I may mutter that over and over and over.

Hopeful, I hope that your day went as expected and that you are able to post.

*susan*

tinkermax

Hi Tina

I had my mastectomies done separately, had lumpectomy first which found the cancer, then right mastectomy three weeks later (just as well as they found another IDC plus extensive DCIS high grade).
Decided to have left mastectomy as a precaution as neither IDC (2.1cm and 0.7cm) or DCIS has showed up on mammo or 2 ultrasounds.

I have to say that having both mastectomies was a breeze, I was up and walking around an hour after first mastectomy, 2 hours after second, allbeit with an IV for fluid and another for morphine (which i didnt need), plus drains.

I got my period the day of the second mastectomy, and I suffered a lot more with period pain than anything else.

I hope your mastectomy/mastectomies is as painfree as mine.

Maxine

foxxf

Well I'm back after treatment no:2 and doing O.K.
Although today is day 7 having said that.

I mentioned to the Onc that after treat 1 I had to go to the hospital cause of vomiting and he gave me a stemitil suppository. Which this time slowed down the vomiting but did not stop it. So we went off to the hospital again this time...

I forgot to take my hospital kit (port needle and instructions,chemo info book etc) and when I got there told them that last time they gave me a maxalon shot and it didn't work then a Zorphron shot which did the trick. Can I have some more please..well the emergency Dr decided that the Port looked interesting and that he really should do a blood test just in case. (no temp, just vomiting) Sent hubby home (15kms) to get port needle and decided to have a jab at my left arm (non surgical side)while we waited, which has almost no veins in it (reason for port).After digging around with a needle for approx 5 mins and not finding a vein he then decided that we probably don't need to do a blood test after all...so a 2 inch bruse that is still there 7 days later he gave up. They don't see ports much here in our small town and Dr had never used one he seemed pretty nervous so I am glad he decided not to use the port cause I would hate to think what would happen if they stuffed that up..

unless I am dying no one at the local hospital will be touching my port, and if they want blood bad luck.

Eventually got my shot was fine and went home.
Another adventure in the Chemo journey...
Nicole

foxxf

On Tuesday I went to a Look Good Feel Better Workshop which was a laugh cause I was on day 5 past treatment and Looked like crap,felt like crap..

The day was great, I was the only one there under 50 which was a bit daunting for me but the ladies were lovely and the cakes delicious...lol

I had never tried on a wig and it was interesting to see the different styles etc... however there was just too much dead cat thing happening for me, confirming the decision that I had already made to go with hats and scarves.

It was a wonderful day and anyone who has the chance should try it.

Nicole

foxxf

I got to meet Leannem's hubby Scott on his fundraising walk from Brisbane to Sydney yesterday.

He came by the front of my house around lunchtime and I went out to have a quick chat and donate some money. He is a great guy and Leanne should be proud.

Back to Chemo I have just developed the metalic taste in my mouth but it's there all the time. Anyone have any suggestions?

Even just for a little releif?

Woke up this morning and taste was so strong wanted to puke.

Thanks for info
Nicole

leannem

HI all!

Nicole, thanks for ducking out and saying hi to scott. He always loves it when people approach him and knowing I have my cyber friends to chat to reassures him somewhat. sorry to hear you are feeling so crap- hopefully you are hanging on okay now.

So who has been keeping an eye on the news here in Oz about the herceptin going to the TGA?? FANTASTIC!!!! First step of many but a great start.

A question for you guys- who has changed their diet since diagnosis? I hear all of these "cancer diets" and wonder if anyone has changed at all?

Cerridwen and Joanne- welcome to these awesome boards. I have only recently joined and find them great to rant, rave, chat and get advice and support from those who know where you are coming from. I am 28 with 2 boys 3yrs and 4.5mth Stage 2 invasive ductal carcinoma muliti focal 3cm and 2.5cm, ER+/PR ? HER2 + and had lumpectomy.

Hmm, the what to wear on your head debate.... I must say I do scarves mainly and have only worn the "furry beast" (wig) on one occassion. The bald head gets unleashed alot- even in public- as I get irritated by wearing things on my head that I am not used to. I find it is getting easier to do and my 3yr old just thinks its funny that me and the baby have the same hair do!

Hope you are all well
xoxo

Pegk

Hey Joanna,
Greetings to a fellow New Yorker (and I grew up on Long Island)
Sorry you have to be here, but we're all here to help!
I'm just 1 treatment ahead of you. I finished A/C and will be getting my first Taxol next week, also dose dense. There are several of us on that protocol.
Keep in touch. We'll get through it!
Peggy

Pegk

So Susan,
Sorry you had a bad day, but your done!
Get past those bad side effects quickly and CELEBRATE!
Well done!
Peggy

jlpd

Oh Susan...I'm so sorry you had such a hard time. With my last AC they had trouble pushing A, wouldn't go...but it wasn't my regular nurse, either...had to put in a new IV, and then didn't have any trouble...What I am having trouble with is the the tech who pulls my blood every week. I don't want to hurt anyone's feelings...but she scares me!!! Normally doesn't hurt to have blood pulled, but she had a heck of a time. I don't know where all the other women are who work in the lab, but I'm going to have to say something. With my AC going in my veins, I can't afford to have a tech messing up with my only good vein. Yesterday's orders said 'finger stick only'...thank goodness! Susan...I'm so glad this part is over for you...I have two more to go, so I'm half way there. I just seem to not have as much energy this time.

A question for anyone getting Neulasta shots...My white count was down, so they gave me a Neulasta shot the day after infusion...My nurse said to expect bone pain and to take ibupropen for the next 72 hours...I did...no pain...until yesterday, which was day 7 after the shot. It wasn't bad...just achey. Normal? No fever...probably just tired...but at least I got a good nights' sleep last night thanks to Benedryl (had a sinus headache too!).

Nicole...dead cat thing?? Too funny! I have a wig that I bought (and my insurance which is with the State of NC didn't cover it!)...and I'm wearing it. Everyone says it looks great...I just feel like it looks funny because it doesn't look like ME. Actually the wig looks BETTER than my own hair! I have a feeling as treatments progress, I will start wearing more hats and scarves...they are so much more comfortable!

Well, off to fix my breakfast...steak and eggs with cheese this morning....Leanne...I will change my diet once I get through treatments...for one reason to lose weight, and secondly to cut fat in my diet. But for now, I need to eat whatever appeals to me to keep my energy up and keep my stomach from protesting. It's funny how when I have my infusion, my weight is up, but within the next week, the scales have dropped 7 or 8 pounds...all waterweight and lower intestinal distress....(actually, I should have dropped about 5 pounds just from my mastectomy considering I'm a 36DD!!)

Hang in there everyone....

Janet

Pegk

Nicole,
You've had some up and down adventures!

That metallic taste, I have heard, is because the cells in our mouth cycle faster that other cells, so taste buds are affected. With me, it comes and goes, but for some reason it seemed more prevalent during the beginning of my treatment. (Maybe I'm used to it now?)
It makes water and bland foods taste terrible, so I want everything sweeter, saltier or spicier. I find chewing a sharp minty gum helps or sucking on a cinnamon candy.
Good luck!
Peggy

Pegk

Leanne,
Congratulations on the first success with Herceptin. Looks like your's and
Scott's efforts are paying off.

I can't comment on diets yet, because we're still doing take out because of the kitchen renovation.

Headwear-still doing scarves mostly, and love those earrings!
I usually wear the wig where people don't know me (Family Day at my daughter's college) because it's so shiny and fluffy (not straight and limp like my real hair was)that it makes me feel like a phony (but less like a cancer patient). I haven't gone bald in public, but it's getting chilly here in New York.

Janet, I havent gotten any pains from Neulasta, so I can't help you there.
But that breakfast sounds yummy. I think I'll go eat!

Peggy

susan_02143

Peg,

I think you have hit the nail on the head. Breast Cancer Awareness is a wonderful thing; using it to sell moisturizer trivializes what we are all going to.

The awareness part is wonderful. The days of celebrating survival and remembering those who didn't make it is affirming. It is the blantant commercialism that is disconcerting.

Of course I feel that way about most major holidays too. Did you read in the NYTimes that a number of large companies are trying to make sure you buy your major Xmas presents from them before that first heating bill arrives? These are the tactics that drive me nuts.

Thanks for clarifying the difference between awareness and all that other stuff we are seeing this month.

*susan*
a decadron-inspired post

susan_02143

Nicole,

Wow! Is this doctor certified to access a port? Doesn't sound like it at all! I surely sympathize on the vein part. I have plumb run out.

Hope that you are getting to the good days by now.

*susan*
a decardon-inspired post

susan_02143

Janet and Peg,

I am not sure that it was a bad day, it was just harder than expected. I admire my nurse for taking the right actions; it wasn't easy for her either. But, there is no way we want that drug under the skin and so there really was no other ethical choice.

Today I have no bruising on my hand which seems like a total miracle!

My blood is always drawn with a finger stick and this is true of all chemo patients who don't have a port. From now on, I may insist on this even though I know it costs the hospital a lot more money. The pain and damage to my body is so much less.

*susan*
a decardon-inspired post

susan_02143

Nicole,

How cool is this that you met Scott during his amazing walk! I love the connections.

As to the metallic taste, other women on these boards have mentioned minty gum and sour lemon candies as remedies. Since I have't gotten metal mouth myself, I can't speak from personal experience.

*susan*
a decardon-inspired post

susan_02143

Quote:

---

A question for you guys- who has changed their diet since diagnosis? I hear all of these "cancer diets" and wonder if anyone has changed at all?

---

Leanne,

I have changed my diet since chemo; I eat whatever I think I can tolerate.

During my real life, my diet is actually very healthy; I just eat too much for my metabolism [which at age 35 simply stopped.] After my treatments are done, I am planning to make some changes to loose weight. This will be very difficult for me. My mother is well over 200 lbs, my sister is just over 200 lbs.; these are the genes I am fighting.

But, right now, major lifestyle changes seem too drastic to my docs. Nurse Jenn did tell me yesterday that her biggest problem with breast cancer patients is how much weight they gain during and after treatment. She told me that I may keep the 7 lbs I normally lose during Day 1- 6 off this time.

Also, the chemo diets I have read seem too fadish to me. I am going to try the 'in moderation' method, same foods mostly, but a small dinner plate.

Some rambling thoughts. Sorry 'bout that.

*susan*
a decardon-inspired post

susan_02143

Gifts

As I mentioned early this month, my Nurse Judy has been wonderful. She is patient, good-humored, and has been one of the 'gifts of cancer.' Since she lives near me, I quizzed her yesterday about some of the eateries she might like in the bustling square. Nope, she doesn't care for the BBQ place, or Indian food or the other student-driven establishments, but she does like JP Licks ice cream.

Last night, I had my last snack of the day at JP Licks and bought her a small gift card. I have written a letter of thanks, attached it to a card and included the gift certificate.

Though modest, I hope that the letter conveys my feelings and that she and her family enjoy a treat together.

*susan*
a decardon-inspired post

txred9876

My chemo nurses are wonderful too. When I was having such a hard time with the fever and they had to draw blood from my port they were very patient and always have a smile on thier faces and a kind word of encouragment.

I have had the problem with my mouth tasting yucky...something salty or sweet usually does the trick at least for a little while.

I am so glad I got my port when I did but normally I have to have the lab draw my blood...they only time they did not was when they knew I had a fever and did not want me to leave the infusion area.

One thing that I keep telling myself....this is the main hard stuff and I can make it through anything for the short term! I keep reminding myself of this....sometimes hourly...daily...or by the minute.

In a year or two....we will all look back at this and say...I DID IT!

We are all survivors.....

Tina

PS...I am feeling much better today....not as tired and somehow....managed to pick up a listing that I will go sign up today (for not working...I sure do answer lots of phone calls!)

lynellb123

I thought that was interesting that u were charged 10,00+ for the Nuelasta shot. I was kind of shocked that I was charged 6,000. I live in NJ & I see that u are in Boston so we're not even on different coasts...hmmm this whole insurance thing is a real pain!

lynellb123

I live in Central NJ and was looking forward to the Komen Walk for the Cure (my first) Sadly with all the rain last week the walk was cancelled because of muddy conditions. I was told by another survivor-friend how powerful & motivating it was to be surrounded by so many women having BC, surviving BC or even family members having a direct connection with BC. I will just have to get my motivation from these boards..Thanks to all who keep the positive messages coming

sholroyd

Hi all

I am keeping tabs and reading. My time is limited at present - I am still thick (blood of course) and having to make daily visits to hospital for blood thinning injections alongside the Warfrin until by blood gets stabilised - grhhhhh. This thing WILL NOT take over my life !!!

I am dreading Tuesday which will be my 3rd chemo treatment - beginning to wonder if there is anywhere left to stick a needle.

Speak soon.

Sandra from the UK

foxxf

I was given a nuelasta shot to do at home for the first time after this treatment and the Chemist told me
"Keep it in the fridge untill you need it DO NOT FREEZE IT it cost us $2,000" That's Australian dollars so $10,000 US or even $6,000 US sounds very expensive.

Sounds like someone is making a fat wad of cash somewhere.
Nicole