Anyone starting chemo in June 08

LibraGirl

Kaejon - the info I have is that the port is easily removed in day surgery (and sometimes in the dr's office) when your dr feels you no longer need it.  I need to keep mine in for a year because I will be getting herceptin once I finish my 4 rounds of AC.  Why do you need to keep it in for a year after treatment?

Glad to hear most of us are handling the first treatment reasonably well.  I am also having the groggy/fuzzy headed feeling (day 6 for me), sometimes a slight headache (so far tylenol helps), and a constant "edgy" stomach.  I've stopped taking my backup anti-naseau med (prochlor) because I want to drive and work (just part time); luckily I've been able to eat just fine, altho my taste buds are definately off.  I can't drink coffee and have switched to black tea.  Overall, these are small complaints.  I hope the remaining treatments affect me about the same.

Oh, has anyone else noticed they are very sensitive to smells now? 

Rovergirl

I go for my second weekly infusion of taxol today.  Last Wednesday I had my port inserted and first infusion with very mild side effects - nothing worth complaining about that's for sure.   I'm looking at 12 weekly infusions of taxol and then 15 weeks of AC so the port was a necessity.  I'm hoping this week's infusion goes as smoothly as last week's.

GramE

Wish me luck today with the surgeon's visit. She will give the final OK for AC x 4, every 2 weeks then Taxol X 12 once a week. Then, surgery after. I was told the reason for a port is to preserve the veins, as leakage can blow them and they become useless, even for routine blood work. Also, much nicer for those with arm problems.



This discussion site has been a god send for me. Almost any question I have had has been answered more than once, and the se explained thoroughly -- and the helpful hints for getting through this and the hope, almost a promise, that things will get better.



Now I need someone to go upstairs and tell my Big Foot, aka elephant, neighbor, that he needs to learn how to walk more quietly... hee hee.... Besides waking me up in the middle of the night with his clomping, the dishes rattle in my cupboards and the apartment manager seems clueless how to handle it. I dont want to turn my stereo up so loud it disturbs the other (good) neighbors. Since I live alone, I obviously do NOT want a confrontation with this "dude". Just another note: this building is not old, built in 1999, and i never hear any other neighbor's tv or stereo or door slamming.



Thanks for letting me vent about that. Good luck today and this week with pain free and se free peaceful and relaxing sleep. lefty/Nancy

kaejon

libragirl - i'll find out more when i have my port put in tomorrow,but when i asked when they would remove it they told about a year after i'm done with treatment. i'm not sure yet what exactly i'll be getting until i see my onco on the 23rd.

flyrzfan

hi all - sorry to have dropped out of sight - after first round of a/c all heck broke out with my system...headache, nausea, hot flashes, my sense of smell was/is so strong i gag on most smells and it kept me from eating for 3 days...except popcicles -those were the best! Someone asked about Aunt flow earlier back (sorry, didnt take notes) - I was right in the middle of her visit and a/c sent her packing that day...it was definately not a joy ride. I got tx on

Thursday, did not feel well until Tuesday - but with exception of sense of smell and being a little tired, the se's went as quick as they came. Will talk to onc about different nausea meds for next time - used standard Emend, dexa...and ona...something or another - should have been good but def was not. Glad to read most of you fared well, for those who have not started yet - fear not, my system is sensitive to ALL meds so my reaction was normal for me. At least I know what to expect next time and that they go away fast on day 6.

Best wishes to all - hope everyone is doing well....

Bonnie 

BBLady

Thanks otter - that helps ease my fears alot! 

I'm headed out to do my 'pre-chemo' shopping.  Just ordered a (cheap) wig on line, I hope it works o.k.  I was told that my insurance won't cover wigs, so will see what this one looks like before I pay out lots of money.  I probably won't wear them much since its summer and I'm in Alabama where it's really hot, but I have teen-age sons and don't want to embarrass them - especially if they have their friends over. 

Will start chemo tomorrow...

Hope everyone is having a good day today!

robyn46

I don't seem to be turned off by many smells, but certain things just don't have any appeal to me. Coffee being one (I wonder if that's part of my problem with headaches - caffeine withdrawl?).  I seem to crave milk products, though, which is strange.  Still battling this headache and today, day 7, I'm feeling much dizzier than in days past. I was hoping things would improve not get worse.  Could this be the "nadir", i.e. low period for my WBC - anybody have that experience? I am finding that exercise really helps my energy level. I try to get 30 mins of relatively intense aerobic exercise each day - mornings seem to be the best for me.  Then my husband and I try to take a walk at night, which helps me sleep. Last night was the first night since last Thurs. that I didn't take an Ambien and I slept pretty well.  Trials and experimentations................  Glad to hear most everyone is doing pretty well.  We must be a "healthy" group, except for this little cancer thing..................

Vinogal

Thanks Westie for the update on the Juravinski centre.....I was wondering about the ice chips.......I just can't wait to get there.....crazy.....who would have thought I'd be anxious for this ride.......it just seems that the wait between surgery and chemo has been way too long.....apparently I'm first on the cancellation list.....but I guess they don't get many cancellations........looks like I will probably end up a July girl......consult is scheduled for the 23rd.....and I imagine it will take some time before the first tx......but I think I'll stick with you ladies.....as I feel comfy here......and it's nice to be able to learn from your experiences......thanks to Bonnie for the info about Aunt Flow.....that is one of the only things I am looking forward to........my periods are brutal.........anybody else have anything to share.....about getting or losing their periods.....

Cheers

Jax

familyroks

LibraGirl - I find that my tastebuds are off for certain things.  I can't drink coffee the day after tx.  Then for the next 5 days, I can only manage 1 cup or I get lightheaded.  After that, I have my regular two cups with no problem.  I've also discovered that I have lost any desire to eat foods that I ate the morning of treatment.  I never had any nausea so I don't understand why those items just aren't desireable anymore.  I hope I get my taste for those things back.  Its kind of limiting my breakfast menu.

And yes to the smell sensitivity.  For the first week after treatment, I am very sensitive to smells.  What normally wouldn't bother me can be very overpowering during that time.  Especially if it is perfumy. 

Stickerlady

I live in Valdez Alaska, but I fly to Anchorage for my Dr. visits. I am Stage 1 grade1 ER+pr+and H2her-. I just started Cytoxan and Taxotere this monday the 6th. So far I feel wonderful except I have had the hick-ups about a hundred time since. I get them after I eat anything or burp. Has anyone had this. I was very tired yesterday because of all the stressof not knowing what to expect. I took Ativan and help me to sleep yesterday and last night. I needed it.I went to get the White blood count shot yesterday and still feel fine. I hope I am O.K. tomorrow I get to fly home and stay there for 3 weeks. Actually I have to fly back next Monday the 16th for an appt. with my surgeon and to have blood work at the Oncoligist.

My husband  and I are staying in a beautiful house called a Heros home here on the Air Force Base. Nice place. It is hard to get  a hotel in the summer here in Alaska. This is provided by the YMCA. We are very lucky. They have this set up for when all my treatment happen. I will have to stay in town for 6 weeks during Radiation. I have a 18 yr. son just graduated May23 and a 17 year old daughter that will be a Sr this year. Both Great kids. They holding down the fort while we are here.

I saw one person from Alaska here are there any others? I hope I continue tofeel tis good. Good luck to all and Prayers to you all.

texasmom

I felt pretty good after treatment and the next day except that I didn't sleep well the first night. Then I started feeling some worse. My stomach hurt all the time and I had a headache much of the time. But I could eat anything and smells didn't seem to bother me. Everytime my stomach hurt, I would eat. I probably gained five pounds. I did have chemo brain and was really tired. I had the Neulasta shot second day. I had traveling pains (over here and then over there) for about 3 days after treatment. I do think overall it was better than expected but I'm going to plan ahead for constipation next time. I also hope to find something to help with the pain in my stomach. I continue to get hot especially at night. I wasn't too concerned about not sleeping well the first night because I wanted to go the bathroom often to get the toxins out and I wouldn't have done that if I took a sleeping pill.

Someone mentioned getting their port out in one year. I will have treatment for a year and thought I would get mine out after treatment. I'm not sure what the standard is but there was a lady that came into the treatment room while I was there to get her port flushed and I thought she said she had it five years. Now that she is sure that she is cancer free, she is planning to have it taken out. I might have been drugged and misunderstood. That seems like a long time to keep a port if you aren't using it for anything.

BBLady - ask your insurance company if they cover a cranial prothesis. They call it a 'wig'. You have to go buy it from a shop where they give you a receipt for a prosthesis. Your doctor has to write a prescription in order to be reimbursed by the insurance company.

KKing

Glad to hear everyone is surviving the se with minimal problems.

I have to admit, I had this super strong smell thing going on for a couple of days.   I couldn't stand being too close to food.  Now I am on day 8 after treatment and things seem okay.     You are right about things not tasting the same.... I am a big tea drinker and it took me 5 days before I could stomach tea.    

Jax,  it seems you have been waiting awhile now to start your treatment... glad you are staying along with us.

Liz19,  good luck tomorrow ..  just make sure you do the anti nausea meds way before chemo..... I think if I had done that instead of getting it with my chemo.. I would not have been sick for a day or two.

Welcome stickerlady... sorry we had to meet this way

Bonnie... sorry to hear you had such a hard time.... hopefully things go your way from now on.

Well,  I am off to do shopping... try and avoid the germs out there.

Keeping you all in my prayers

Karen 

otter

Stickerlady, I've also been getting Taxotere & Cytoxan.  I had a terrible problem with burping and hiccups during my first treatment cycle.  It turned out to be due to really bad indigestion, which killed my appetite and made me feel miserable for about 8 days.  Once I got the indigestion under control (which didn't happen until the 2nd cycle), there were no more burps or hiccups.

I tried using over-the-counter, generic "pepcid AC" during my first round, but it wasn't strong enough to control the acid indigestion.  My onco said she would prescribe Protonix, but first I might want to try OTC generic Prilosec (omeprazole).  She said the OTC label dosage is 20 mg per day, but she told me to try taking two tablets a day (40 mg), which is a common prescription dosage. I started taking 40 mg every morning right after my 2nd TC treatment, and I took it for 9 or 10 days. It worked great!  After about 10 days I didn't need it anymore until the next treatment cycle.

Be sure to ask your onco before you take any new drugs, though, and especially before you try taking something at a higher dosage than what's recommended on the label.

BTW, Stickerlady, you said your 1st tx was "this monday the 6th."  Did you mean the 9th?  The reason I'm wondering is because there is a whole separate thread for women who are getting Taxotere & Cytoxan (regardless of starting date), and I am keeping a calendar of our treatment dates.  I'll put you on that calendar if that's OK.  BBLady, you're on TC also, right--starting the 12th?  I'll be posting an updated calendar some time today, if I can get myself motivated.  (This 4th TC treatment has really kicked my butt!)

otter 

Wyoming

I should be starting chemo towards the end of the month. I had a lumpectomy in May and a re-incision June 5 to get a greater margin and sn biopsy. One sn had cancer so the aux nodes were taken and am waiting for the results. I also had a port inserted.

If it were up to me I would get started today!!! I want to get it over with.

wannaretire

Hi,

I am a newbie here. I just registered today after meeting with my onc, he suggested tch to start soon.  I have so much to learn!  I am looking forward to learning much from all of you and traveling this path together.

Christina

Stickerlady

Yes Otter, I did start on the 9th. As My husband says to me I have Chemo brain right now. I can't think straight. It's from the Stroids I think. I feel wonderful except these hick-ups and alittle fatiuge I went up to take a shower and came downstairs 2 hours later after taking a nap in my nice comfy bed. I just want to sleep for a while. Those are good side effects if you ask me. I love this site and decided to read lots before joining and after my first Chemo. Thank You everyone for being here so we can support each other.

gymrat

Hi I have been struggling over chemo decision. I am scheduled for 6/17 for AC*4 every other week. I am 5, had 2 tumors, Onco scores of 11 and 10, ER/PR+ and Her2-, clean nodes so I have been very indecisive about chemo. Statistically, its a less than 3% improvement. That would be OK if there were no long term side effect risks. My onco thinks they are minimal and worth it for even 1% if you are that 1%. Did anyone else struggle with this? What affected your decision?

GramE

I got the go ahead to begin AC on June 19 every 2 weeks for 4 session. Onco called it dose dense. Then 12 weekly sessions of Taxol. So, add me to the Junnies - lol.



I was also told my port would be in for a year because after surgery, which will be after chemo, I will have additional chemo and/or radiation.



Good Luck to (((((( all )))))))). And Thanks again for posting.



Lefty/Nancy

gymrat

Stickerlady - your tumor profile looks like mine. I hope things continue to go well for you. Did your onco give you any choice regarding chemo or Onco test?

magentagirl

I just had my first today June 11, 2008. It took 5 hours to get the Herceptin, Taxotere and Carboplatinum. I feel fine right now. Absolutely normal??? I guess I won't tomorrow, but I came home and walked my dog and had dinner and am trying to drink lots of water. What drugs are you getting? I printed out all the chemo tips and bought a lot of the stuff. the one thing I didn't listen too that I wish I has was the one about bringing your own magazines. The People magazine was from 2005! I did bring a dvd player and watched Two and a Half Men so I could laugh while I was getting dripped. I also wish I'd brought my book, stupidly I thought I wouldn't be able to concentrate well enough to read...but it would have been great to have.

Bonnie02

Hi everyone, saw the oncologist today and he has switched my chemo from AC to DC because the mega scan was not up to what it should be. Is anyone here on DC, if so what side effects are the worst for you.

Thanks

Bonnie

BBLady

Hi

gymrat - I too struggled over the chemo decision.  My stats were around 88-90% without chemo and up to 93-95% with.  I really went back and forth as to whether the risk of the chemo was worth the extra percentage points and finally decided it was.  I'm starting tomorrow and hope I don't regret my decision!  What helped me decide was the fact that my cancer was very aggressive and my oncologist said that there's only one chance to wipe it out and that chance is now.

otter - yep, tomorrow's the day I start TC.  I need to keep checking the TC thread too.  Went pre-chemo shopping and got almost everything that was suggested.  Figure if I don't need it, I can always take it back.  (That's why I love Wal-mart!)

texasmom-I'll call my insurance company tomorrow about a 'cranial prosthesis'!  The shop I got my surgery camisole and bras out said they didn't think it would be covered, so I haven't checked.  I sure hope it is.

Hopefully, I'll feel like checking in tomorrow night and let everyone know how it went.  Hard to believe it's here, but I'm like Wyoming.  Once I made the decision, I'm ready to get it done!

otter

Bonnie02,

By "DC", do you mean docetaxel/Cytoxan?   That's something oncos are using lately instead of AC (Adriamycin/Cytoxan).  Docetaxel is the generic name for the drug "Taxotere"; usually on these boards that combo is called "TC" (Taxotere & Cytoxan).

If that's what you're getting, there are a whole bunch of us over on the "Taxotere and Cytoxan" thread to help you through it, besides these ladies here on the June '08 thread.  Hey, did I understand correctly that your onco is switching you even though you've already started your AC treatments?

BBLady, you'll do fine tomorrow.  The TC infusions themselves were really a non-event for me.  The hardest part was the 2-hour drive (each way) my dh and I had to make from home to the cancer center.  Made for a very long day.

otter 

Bonnie02

Otter - yes, I had one treatment and next week I start the other one which I think they are still calling it the second. I don't believe they will be starting it all over again.  Yes you are right it is Taxotere and Cyclophosphamide

Bonnie

Rovergirl

BBLady -

I went wig shopping last week with a girlfriend, which was a very traumatic experience for me but also a little fun.  The biggest surprise was my hair is not the color I thought it was.  I kept looking at reddish colored wigs and my friend and the clerk kept pointing to lighter wigs..... when did I get so blond -ish / gray-ish / very little red - ish?

I know you bought a mail order wig but I recommend at least going to a wig store before you loose your hair.  I got a lot of helpful hints - care and maintenance plus how to put the crazy thing on.  I ended up buying a reasonably price wig.  Like you, I don't know how often I'll wear it but I have it.  I'm thinking of doing the Kojak look - bald, lolly pop and attitude!

If your insurance doesn't cover the cost of the wig (my didn't) save the receipt for your taxes.  It will be tax deductable under medical expenses.

I hope your chemo went well.  I had my 2 second session of taxol today and have only had minor side effects.  I hope your chemo goes equally as well.

BBLady

Rovergirl-thanks for your support.  I'm hoping it will go well today - but still trying to be prepared 'just in case'. I hadn't thought about taking my 'cranial prosthesis' off my taxes.  That's better than nothing!

Will try to check in later.

Donalee

Magentagirl,

Hi!  There is another thread going called taxotere, carboplatin, & Herceptin that you could join in on. Several of us are on that exact "cocktail". I started June 2. Day 10 was my best day coming back to normal.

Donalee

familyroks

On the tax thing, just in case you are not aware, you should save all of your receipts for out of pocket expenses as they relate to your treatment.  You should also keep track of your mileage.  All of this is tax deductible.

~Adrienne

texasmom

BBLady - My oncologist told me the same thing almost word for word. I didn't want to look back in five years and wonder why I didn't hit the cancer with the big guns while I had the chance so I chose chemo. The first treatment wasn't as bad as the fear of the unknown. I made it through without much mishap and felt pretty near normal this week....went back to work and everything. Now I know that I can make it through the rest of treatment unless it gets worse.

I am taking TC + herceptin. You said that you had a heart problem that prevented you from taking the herceptin so I think you made the right choice to hit it with what you can, when you can. My oncologist has been very nonchalant about the herceptin. He hasn't asked me about my heart or done a pre-treatment heart test. The nurses said herceptin was a piece of cake with very few side affects and that my hair would even grow back. I think I'm going to directly ask the doc about whether I need more heart testing during treatment because I have to take it a full year. Are you doing radiation after chemo?

Insurance companies don't want to pay for anything but bare minimum and generally only one each of anything.

On a lighter note, since you have sons and live in the south I assume that the BB stands for baseball mom. I was a basketball mom for many years but my daughter is now college age.

Hope you first chemo isn't too bad.

texasmom

Magentagirl - What part of the country are you from? Why did you have a full masectomy with a tumor so small. My sugeon recommended a partial for me but I wonder if I should have had a full. I worry that there is some cancer lurking around in there. Are you doing radiation after your chemo?

We are in the same HER2+ club. I had my first chemo (TCH) June 3. It took about 4-5 hrs. Time flew by because I took a 'chemo bag' complete with snacks, water, book, dvd player, movie and small radio w/headphones. I was prepared for anything. They even said I could bring my own blankie so I did. Next time I'm may only take a sweater and will use their blanket because I took too much stuff.

I hope everything continues to go well for you.