Starting Chemo in JAN 2007

Anonymous

I keep forgetting to post this - my chemo is FEC and I finish May 11

NOLONGERREADINGORPOSTING

Rebecca, I am wondering if Nurse Ratchet still has a job?! You know, there were times when I felt a little guilty about defaming her, but I really don't want her to be in a place where her jumbled brain and poor judgement will continue to upset chemo patients.

It took a *lot of noise* to get this change: complaints to my surgeon, a letter to the head of oncology, copy of the letter to my PCP with more discussion, a call from my PCP to head of oncology. Those folks are on a real power trip!!!!

ritajean

Carol...CONGRATS on finishing the AC! You are indeed on the home stretch now! I'm so glad for you!

Rita

Rebecca

Well, Mizsissy one can only hope that justice was served. At the very least, maybe she was relocated to an area where she would do less harm, like scheduling elective surgery, or cleaning bedpans in the geriatric ward. I was always particularly disturbed by your descriptions of her "smugness" as if she somehow got pleasure in your frustration and discomfort. Obviously someone who is NOT in the correct line of work if you ask me. I think that she would probably do better filling out tax forms for HR Block or something...at least then she can cause discomfort, but not threaten anyone's life!

NOLONGERREADINGORPOSTING

Actually, I think scheduling elective surgery might be far too dangerous...she's really terrible at schedules. People might end up getting the wrong surgeries. I think maybe cleaning bedpans in the geriatric ward....that's a good one!!!

ritajean

Hi gals!

Terry and Tae...so glad to see you're back. I'd been worried about you. I agree with your idea that we should always have the same nurse.....unless it Mizsissy's ex-nurse!!!!

Dar and Mizsissy....Hang in there! You're about done with that horrid AC. What comes next for each of you?

Amera...Thanks for mentioning the Emend. I am going to ask about it before I have #3 on Friday as the Compazine hasn't seemed to do much for me, either.

Welcome Caya and Mrs. Shey.......you're such great additions to our group!

How'd it go today, Lynn?

Iowa Cindy...YES!!!!Spring sure sounds wonderful to me!!

Rebecca, I'm so sorry that you're having such a hard time right now. Hang in there. You can do it!

How did chemo go this week for the rest of you who had another treatment???

Rita

ritajean

Mizsissy...there is a gal on our Illinois thread that can't get a picture on. Would you be willing to help her? If so, please go to the Help Me Make it Through Treaatment forum and scan down to find Illinois Ladies going through BC or let me know how I can direct her to you. Do not feel obligated. I wish I could help her but you saw how technology ignorant I am!

Rita

NOLONGERREADINGORPOSTING

I'm in the middle of a major kitchen cleaning today and am taking off to Motown tomorrow...and then chemo...maybe I can fit this in somewhere!!!

Rebecca

Rita..Emend is THE STUFF!!!!

My onc is big on the preventive meds, and I have not had very much in the way of nausea at all (except this round, I have yucky belly, but I think it is because of the heavy bone pain )

I get an infusion of Aloxi, and an Emend before they start my infusion, and I have Zofram and Compazine on hand at home for emergencies...but in practice I have rarely used them. They should make Emend standard protocol I think...there is no reason to vomit in today's day and age...particularly when there are so many other discomforts associated with chemo that you can not do too much about.

mer1957

Thanks for the great list! I finish Taxol on 4/5 just in time for Easter! Then hopefully surgery on 4/27.

NOLONGERREADINGORPOSTING

Hey Mer, finally another Michigander! I was beginning to think I was all alone up here. What part of the state do you live in? I'm in Pinckney (though formerly from A squared).

Mizsissy

robertin

Well I'm back. Had my 3rd AC on Tuesday, and was planning to go to work on Wednesday, Thursday and Friday. Wednesday I kept dozing off, so I didn't go. Thursday I didn't even make it out of bed. And today, I got dressed, put on makeup and could barely walk to the corner of the street, one house down. So, no work this week. Mizsissy, I think you're right. Pampering yourself is the only thing you can do. It's frustrating, but I simply can't perform at the level I did before the chemo, and each chemo it seems to get a little harder.
So, even though I had good intentions, I have not yet shown my bald head at the university. I do go outside and to the stores and I don't notice any more "looks" than when I wore the obvious turbans and scarves. I still like the feel of it. One thing, I don't have any trouble sleeping. I can sleep all day, and all night.

NOLONGERREADINGORPOSTING

Hi Robertin,

Welcome back from you're third chemo. Just saw your mention of a *university* so I was curious what you taught...ah Physics...a very highbrow field. One summer while I was in graduate school I typed papers for a group of physicists at U Mich, and I must say, even though it was a low grade job, I really enjoyed the group. They were very nice to me and treated me with a great deal of respect. They were so serious and wrapped up in their work; it was kind of creative challenge to me to typeset their complicated equations. I think I threw in a little editing here and there too. When it came time for me to leave, I told I had to get back to work on my PhD in anthropology. One of the more distinguished scholars replied--in all seriousness--that he thought I should stay right where I was, I was in my element. (HA HA) You know, I think I might have been better off if I had stayed!!!! I certainly couldn't have improved on the company!!!

Lynn12

Hi Ladies,

Had my TC #3 today and am definitly in the fog. Saw my Onc before the infusion and when he asked about my nausea last time, I told him I did have some, not severe but wasn't fun. So he changed the premed IV to Aloxi and put the dose so it lasts 3 days. Also prescribed Zofran for when I get home as the Compazine didn't appear to work. So far so good.

Chemo days takes 6 hours from our day from leaving the house to getting back home. Got home around 2 and dh made a fire in the fireplace. I laid around all afternoon watched a movie and dozed.

Got up off the couch and decided to log in and there were 33 messages from all you wonderful ladies. While reading I had so much to reply but can't remember now that I'm done reading (partyly to blame on chemo brain).

So then I'm in the middle of reading and what happens? I get a nosebleed! ARRRGGGHHH! I had this after my 2nd infusion for a bout a week, doc checked my blood and it was fine. Haven't had any for 2 weeks and BAM, the first night I'm home.

I've now had 3 of 6 but will consider myself halfway after the weekend of yuck!

Thanks for letting me vent ladies, I just hate this so much and it feels like the cumulative effect is really coming on strong with me. I'll try to lighten up a bit tomorrow!

IowaCindy

Yikes, I don't know if it's the work of shoveling 10+ inches of snow the last two days, waking at 3:30 this morning and not getting back to sleep, the effects of the Decadron I've had to take prior to this treatment or could it be the new marinade?

Probably all of the above but I'm exhausted tonight. I'm having a hard time staying awake but my dogs aren't ready for bed yet. I'll be up for another hour or so to let them out one last time.

The doctor and the nurse provided more assurances that overall, I should tolerate this treatment easier than the AC. Watch for red palms or soles, I might have some neuropathy, maybe nail problems. Neither would say that they are common to their patients. Report any problems ASAP.

I have to have a CAT scan of my liver on Tuesday. I have had a couple of abnormal liver enzyme tests and I've a tender spot under my right rib cage. Since I don't have a gall bladder to be causing problems she wants to 'be safe' and have the liver checked but she doesn't think there is a true concern.

I'm hoping to have a good night's sleep tonight. I've an appointment with my uncle tomorrow afternoon. Uncle Judd is my mom's twin brother. He has worn his bald head proudly since his early 30s, he's the spitting image of my beloved grandfather. When Mom went bald after her brain radiation treatment 12 years ago, the three of them had their photo taken together. It is a treasured family heirloom now that Mom and Grandpa are gone.

Uncle Judd is now undergoing chemo for a leukemia. I'm not sure of his diagnosis and prognosis. My aunt and uncle are pretty private about that. But I'm going to his house and we're having another photo shoot - his bald head and mine, the next generation.

If the photo turns out good, I'll use it as my avatar.

But now I am 5 of 8 treatments in. This next week of yuk to get through, a week to regain strength and then on to number 6. I am so thankful that the words of the sisters here are true and time does keep moving and we move along with it. When treatment started in January, #5 seemed like a l-o-n-g time away!

Cindy - experiencing the advent of March as a great big Lion!

Robbin65

Iowa Cindy,

I love music festivals also. Actually, I work them. I do reggae and bluegrass festivals mostly. I have never worked a folk festival nor a renasance (spelling) festival although, there are folk, jazz, funk, blues, bluegrass, jam bands and reggae stages at some of my festivals.

In California, we have TONS of festivals during the summers. I enjoy the 4 days ones where you have to camp out.

I am glad I am going through all this now, so that by the spring I can concentrate on my festivals and camping.

ritajean

Good morning to all!

Lynn....don't worry about lightening up on this thread. That's what we are here for. Vent! Vent! Vent! Tomorrow one of us will be doing the same thing. I hope you're getting along O.K. today. Just sit by that fireplace and read. What good book are you reading?????

And for the nosebleeds....take consolation in the fact that they are happening at home. Really I think they are partially stress-related. I had them all last week during the visitation for my mom, funeral, etc. It was like excuse me and I'd turn my head and bleed. This week they have disappeared.

Robbin...And you WILL be ready to enjoy those music festivals this summer, and I will be out on the golf course and everybody else will be out doing what they like to do!

Cindy...I think most of this last snow stopped with you and didn't make it to Illinois. We only had a heavy dusting this last time. You did a good job of keeping it in the "west." Thanks a bunch! :-)

Robertin...I didn't realize that you were a physics prof. I taught JH science for years. One of my favorite units was the work and energy unit. We constructed roller coasters from pipe tubing and learned so much about Newton's laws of motion, inertia, and momentum. I still have pictures of some of them.

Mer...What type of surgery will you be facing in April?

Rebecca...You last post sounded more perky! Are you doing better now????

Well, time to get into motion and do a little work around this house.

More later....everybody have a good day!

Rita

Amera

Chemo fog x 100!! I ventured out yesterday to fill the car with gas and get the mail. At the gas station, I forgot to pop the gas cover and stood there wondering what to do next. After I figured that out, I tried to pump the gas and realized I hadn't paid or selected the price. I paid and tried to pump again. Still hadn't pushed the price button. Finally figured it out. Good lord. This whole thing took me 15 minutes. Maybe I should just stay home for the first few days.

Feeling pretty good on Day 3 as far as nausea. Did I mention Emend is the wonder drug for me? Thank God for Emend! Am still in a fog--having to re-type every word and extremely tired. Not sleepy tired but my body feels like lead. It really is cumulative.

Okay, off to rest some more. I hope everyone is well and at least tolerating things. It seems that our side effects are changing slightly. Some going away, some coming on harder. This is a wild trip. And yes, I do thank the heavens for you all each day. I don't know what women did before these types of support groups. I cannot imagine going through this by myself.
Amera

ritajean

Amera...you said it perfectly...."I do thank the heavens for all of you." I found the perfect poem to share with each of you. www.bettysgreets.com/friend/friend18.htm

I guess you'll have to type it in your address box since I don't know how to make it a hyperlink for you. Give it a try. It's worth the few minutes that it takes and expresses our feelings for each other.

Amera....rest up. You've got another one down!!!!!

Rita

Rebecca

good morning everyone!

it is a bright and beautiful day here in Edison. 9AM, and already in the 50s. I feel much better this morning than I did yesterday...Day three seems to be my killer. I still have some lingering pain, but NOTHING like yesterday (blech). I am going to attempt normal activities today, and see how I do. I DID wake up this morning and make muffins for my kids, so something must be going right (cinnamon bananna yogurt...usually my favorite...kids are loving them, but they do unfortunately taste a bit pasty to me ). We are eating them piping hot right now...then off to saturday morning activities.

Be well everyone...you are ALWAYS in my thoughts!

NOLONGERREADINGORPOSTING

Good Morning Chemo Girls...

Naughty Girl, Cindy, shoveling 10 inch deep snow is *NOT PAMPERING*! Shame on you. You draw a nice bubble bath immediately and get inside for a gentle soak. I highly recommend almond milk.

Lynn, these chemo rounds are horrendous, having to go through it over and over again. Six of them in over 4 months. I'd be depressed too, but the flip side with this schedule is that you'll get some good weeks inbetween. Amera, sounds like you're taking good care of yourself..as long as you STAY HOME!!

Tomorrow is DH's birthday and we're going to do something we've never done only once before, since we've lived here for well over 20 years...head in MOTOWN for a night on the town!! We staying in nice hotel in the northern suburbs, we'll shop a little (I think there's an Anthropologie), find some galleries, have a nice dinner out, come back to our room, rest, and then go out for the Big Event..some homegrown music at Baker's Keyboard Lounge. We're going to see a 6-man band that claims to "redefine every aspect of jazz." I'm so excited!



Then we come back Sunday so on Monday I can get some mud on my brain...just when I was starting to experiment with oils and getting excited. But it's the *last time*...

See yall later....

Mizsissy

Dar1

Good morning all. I agree - day 3-5 are the killers, and feeling like lead is a good description. Last week I picked up a few groceries at Safeway. I paid and went to put my sunglasses on - no sunglasses. Now this is the first paid of sunglasses I've paid more tha $15 for, in preparation of being on Tamoxifen (which makes you more susceptible to cataracts), so I have tried to be very careful with them. I left my groceries with the clerk and retraced all my steps - no sunglasses. I went back to get my groceries, feeling glum. The clerk said "what are you looking for?". I told her, she said "they're on your head!" And there they were. I was too happy to be embarrassed, and just glad I hadn't gone to customer services asking if they'd been turned in. Then I stopped for a latte at Starbucks, went into the bathroom and couldn't find my keys. Found them on a little table outside the bathroom, the baristas were all watching to make sure I got them! I need a keeper for sure.
We have plus temperatures here for the next 4-5 days! I plan to enjoy them at least until Wed. when I go for my 4th round in the ring.
Take care all!

Caya

Good morning ladies

It's a beautiful sunny day here in the burbs north of Toronto Canada - around the freezing mark but at least it is bright after 2 days of snow, ice and general yuch!!
Ritajean - thanks for the lovely poem - I just clicked on it and got right to it.
Amera - make sure you rest and try having a nice long soak in with some good quality bath salts, maybe with a lavender or vanilla infusion to relax you.
Mizsissy - have a great time in Motown - sounds/looks like a great evening there for you.
robertin - I know how you feel about the bald head, we were at a family dinner last night, so i wore they wig, which was much admired, but after dessert when it was just the adults left in the dining room, my cousin asked how my head was - so I asked "do you want to see my bald head, cause I think I look pretty good" - so I whipped off the wig to cheers and much admiration!! I wear those litte cotton caps around the house, only put the wig on if someone is over or going out -
Has anyone had little hairs growing back between chemos? I swear I have some new ones sprouting.
Well everyone have a nice day - if it's not too cold I am going to try for a 20 minute stroll in the neighbourhood.
All the best
Caya

mer1957

I live in Shelby Twp/Rochester area. I here Pickney is beautiful.

mer1957

I will have a mastectomy. I have invasive lobular cancer. The chemo has shrunk the spot that I found so much that the surgeon cannot feel it anymore. The other spot is getting thinner. So this chemo is worth it, but because lobular cancer comes in sheets and is throughout the tissue, there is no hope for a lumpectomy. Anyway, I want it all gone so I am having them take all of the nodes too. Going to the plastic surgeon 3/16 to talk about reconstruction but haven't really decided on that yet as I need 33 rounds of radiation.

sharon56

caya i live in Bradford and was dx'd the same time you were though I noticed a lump in my armpit , then after dx'd with colon cancer , So in Oct and Nov I was in and out of Southlake Regional Hospital. I am scheduled to have rads at Sunnybrook in May . I was looking for support groups in my area and found out there was none ..... one in Barrie but with this winter its a long way to drive for 2 hours . PM me if you like anytime .
mizsissy , have a good time at that jazz club you lucky girl sound like a great night out.
And like you pampering .... I sleep alot and even at day 13 after chemo i still feel the after affects like yesterday . got up had breakfast and coffee sat down here to check on whats up . Promptly 1 1/2 hrs later it ALL came back up ......... damn and I thought that yesterday was going to be a get up and get back to myself day ya right . I was back in bed all day with aches and pains . melted back into my nice warm blanky .....
Today I am out to at least be a chaufer for my girls so they can get what they need , its also tax time so i get a package to do my taxes at home ..... maybe I 'll get money back . ?
Jan Tropical location ohhhh yes sounds good ... my back needs some warming ...... each session its getting longer to get back my energy with trouble even keeping the food down or preventing it from coming back out
Trying today to get that protien and calcium back in me crossin my fingers I can get the food kept in my body long enough .......
I do do housework and read , walking is my next goal to get some nice weather and go for a walk around the block this week . Cannot take my big newfy for a walk but the poodle will do . I envy some of you that are practicing at exercising ...... I just have not found the energy yet .... and before BC I played ladies hockey and skiied ,skated and rollerbladed ..... walking yes my next goal .... any advice ?
Have a good weekend all .......

Aladora

Okay ladies, I had an onc appointment yesterday in advance of my chemo on Monday and we got some results back. Unfortunately, not the genetic results but some that we had been waiting for.

When they did the original pathology report, they noted that the cancer was ER negative but there was nothing about PR or HER2 status. They had to send the sample to Vancouver to get those done as well as to confirm ER status. So, the results.

ER confirmed negative status
PR "faint" positive status, I believe the doctor called it PR1+
Her2 negative

So, put everything together and here is what you get.

3.1 cm DCIS, 20 nodes removed - zero node involvement, Stage 2, grade 3, ER-, PR1+, HER2-

Also, there is a note in the path report that says this:
Immunostains are negative for p53 and for the basaloid marker CK5/6.

Any insight?

Lynn12

Hi Aldora,

I'm sure it's a relief to finally find out your final path results. However I thought that all DCIS is not considered invasive so is therefore stage 0. I of course am not an Oncologist, just repeating what I've read in my hours of research on line. See link below:

http://www.breastcancer.org/dia_pict_staging.html

It says that stages 1 - IV are invasive. Anyway, you might want to ask your Onc if there was any indication of IDC (invasive).

Lynn

Rebecca

Shorti..I do try to exercise, and actually it seems to help with the fatigue a great deal. My goals, however, are VERY modest. I can do 15-20 mins on a stationary bike, or do a light workout with my big bouncy ball (I have a friend who is a trainer, and she made up a little workout for me). Since my bout with bronchitis, I have not done much, mostly because I could not BREATHE, but I am going to get back on track Monday morning. You can do it...just do not OVER do it.

mer1957- FYI I am doing reconstruction now, and my plastic surgeon told me that if you want to do the tissue expander/saline implant route, you have to be fully expanded before rads because the radiation makes the tissue less pliable.

Mizsissy have a great time!

Well, my little burst of energy this morning was rather short lived...sigh. I almost felt normal for about an hour....then my knees started to go all wobbly, and my brain filled with fuzz. We fired up the grill, and I am going to head outside and be a lounge-chair decoration instead of couch candy.

Aladora, p53 is a tumor suppression protein, which is normally inactive. when it is present, it induces cell death etc as a protective mechanism. I am not sure what the clinical significance of the immunostain is, other than the fact that there was no p53 protein active in your tumor. It does appear that certain tumors do stimulate the production of this protein. The other thing that they tested for appears to be a marker that is associated with BRCA1-mutation associated tumors. The fact that it was negative in your case would most likely be a good thing! a disclaimer....I am NOT an expert! You should take this pathology report to your onc and ask for a full translation. I had strange things on my pathology report as well....I did a bit of research, but then got the final word from my onc.

Lynn12

Good afternoon,

Well, I'm out of bed on day 2 and feeling a little less blue than I was last night. Slept a lot and didn't roll out of bed until 11 this morning.

Amera, I hear you about the fog. Last week I had no memory at all whether I made the bed. Was away for the night and called dh to ask him.

Mizsissy, have a wonderful time!!!! You and your dh deserve it!

I asked my Onc about rads so he gave me the name of a rad Onc. I'll call next week to make the appt. My Onc said I'll probably start rads 3 - 4 weeks after my last chemo tx. I want to get started as soon as I can to hopefully salvage half of the summer. I want to make sure that I get all the pretesting and set up done so I can start on time.

Also asked about Tamoxofin. He said I'd start that about the same time as rads. I know that some wait until after rads but I want to stay protected. There were small enhancements found in the MRI on my left breast (which I'm having removed during reconstruction) so I want to be safe.

While getting my chemo, another couple walked in. The woman had a scarf on so I assumed she would be the patient, but her husband sat in the recliner. Turns out she had ovarian cancer and has 1 more chemo left and he was just diagnosed with lymphoma (sp?) and is just starting chemo. WOW! There were really nice and the four of us chatted for the next 2.5 hours. He's on the same schedule as me so we'll see them again in three weeks.

Rita, that's a wonderful poem, thanks for sending!!!

Cindy, that's a great story about the baldies. Hope the pic comes out great, we're looking forward to seeing it!

Caya, good for you for showing your head, I'm sure it felt great! I'm getting stubble growing in as well, maybe it'll last, maybe it won't.

Dar, funny story about the sunglasses!

I'm soooo glad it's March. Spring is on the way and it's the month that we in New England finally start seeing days in the 40's. February is always my worst month and boy am I glad it's over!

Oh, and I found the food of choice for me on day 1 and 2...mashed potatoes!

Well, off to rest more and finish my Patriots puzzle I got for Christmas. ('bout time I guess). Have a good Saturday everyone!

Lynn