Starting Chemo October 2009

Just found this on another thread (the housecleaning one)...

There is a service called Cleaning For a Reason - website is cleaningforareason.org - and they offer a free housecleaning once a month for four months to cancer patients.  isn't that amazing?  That's just what I need!  You just have to fill out a form on their website and have your doc fax them a note telling them how long your treatment will last.  Thought I would share this!

Peace... 

Hi to All!

Guess I'm new to the group.  I will be starting TC x 6 on October 5.  I am very anxious to start, and really only dreading the hair loss.  Although the discussion about mouth sores has me a little worried!!  Oh, and the weight gain.  Seriously, fat, bald, and boobless?!  Cancer sucks!

Just wanted to introduce myself.  I haven't joined any groups, or really talked to anyone about this.  I'm not shy, so I don't know why this is the case.  Is this the area to give you all the full rundown?  It is actually kind of comforting to see that, although we all have some differences, there is a lot of similarity in our stories.  Thanks for listening.

 Laura 

Hi Ladies,

Well I think I'll pop in here if you dont mind. I've quickly read all the posts and think this is the right place for me right now. My first tx was on Sept 14 and Im on DC every 3 weeks for 8 cycles, now this may change as all my pathology & test results were not in when they started my chemo. The first time I was on AC every 2 weeks then Taxol every 2 weeks (ttl 8 treatments) then rads. Im being fast tracked this time as its in my other breast and its a fast growing one. I swear Ive had every test imaginable this time around (within 2 weeks) including having my port put in. I know I could join the Sept groups but I didnt get the same vibe and they were already large groups by the time I logged in. So if you dont mind having an old timer (2nd tx) here I would love to join you.

Im Suz, and I was a Dec 07 gal the first time and believe me this site is the most incredible lifeline. I still talk to and love all my Dec gals on facebook now (we have a private group on there to share anything we are going through) I hope one day to meet them all. I also hope I will feel the same about all of you as we share our ups, downs, fears and acomplishments. Its a real rollarcoaster of a journy. BUT we are strong and can lean on each other on the good & bad days.

Marie K, Im in Vancouver too and am being treated at the Vancouver Cancer Agency. Where will you be going? I was really surprised to see a fellow west coaster here. I here you about being the strong one and not relying on other people to get things done. Im the same, but Im trying to let people help when they offer (I stress trying). Quite frankly it makes them feel less helpless. They want you to need them and thats why they offer. Its hard for our family and friends to see us go through this. Anyway let me know where your being treated (lol what if we had chemo at the same time same place)

Stardust, thanks for the link re: scarves I will look into it.

Here are a few more links.

heavenlyhats.com (or org) will send you 3 - 4 different hats or scarves for free in the states and in canada just the shipping costs. Its a beautiful organization started by a teenage boy. The hats they sent me last time were very very nice

Then there is also "chemo angels". Its an organization of volunteers, you get two angels one is a card angel, they send you cheerful cards and notes every week and the other sends small gifts in the mail, I forget how often, but I found this to be so special as they always seemed to arrive when my spirits needed lifting. For this you actually fill out a questionare of likes and favorite things and the angel uses this as a bit of a guidline to send things you will use and enjoy.

I DEFINATELY recommend going to the look good feel better class. You will not regret it! The tips on how to wear makeup with no brows and lashes (if you lose them) is worth its weight in gold. Quite frankly I was more upset about losing my eyebrows & lashes than my hair.... lol I just got my first real haircut the day I found out I had cancer again. I kept the appointment as I wanted to feel good and a haircut was going to make me feel that way. Ive already went to the class here and love the makeup & cleansers they give you. All the products are high end and non irritating.

Lol I think Ive talked more than enough now. Sorry I can be a chatterbox at times then silent for a week. FYI my tx was a cakewalk this time. the first week was a three day steroid high followed by a three day crash. After that Ive had a headache that is manageable and eat small meals to avoid being gassy & bloated. But I really cant even tell Im on chemo. Im hoping it stays this way.

Warm hugs to you all from me, Suz

Well Hi everyone, I am so encouraged by all the good chemo news (not many se s popping up) b/c I start next thursday IF i can get all the scans done first!  I have to drink a quart of barium for one and my throat is still so crazy sore -ugh. But whatever happens is what happens. I had another way anxious moment in the middle of the night (from 3a to 5A) I meditated for 2 hours and it passed but sometimes alone in the dark -it can be scary (my husband is in the other room b/c of this bad virus I picked up). Luckily followed by relative peace. What a freaking rollercoaster ride. Its so great to hear other people's experiences-its really comforting - I will do the same once I start -hopefully w/ the same good news - Thanks again, Valerie

Hello all:

I am starting TCH chemo tomorrow and am freaking out!  My main question is I was told not to take ANY vitamin supplements.  Are there any exceptions or particular supplements that you have found helpful during chemo?

 Many thanks,

Jen

MaryNJ,

I did start chemo today.  I am taking TC every 3 weeks for 6 (or so) treatments.   It wasn't a bad experience except that I appear to be allergic to the meds.  That turned it into a long day with benadryl, tagamet and hydrocortizone mixed in.   We are going to try pushing the benadryl and tagament first next time and see what happens.  If I still react then we will have to change my treatment.

My husband went with me and kept me entertained and the nurses were great.  I met another cancer patient who is on chemo for liver and colon cancer, stage 4.  He was really up beat and only has one treatment left.  In fact, he went polka dancing with his wife last Saturday.   I mention this so we can see that there is life during cancer and there will be days where we feel good enough to dance! 

Nancy, Puffins & ReneeJean - I hope everything went well for each of you.  As I said, other than being long it was not too bad of a day (although it's only been a couple of hours since my treatment finally finished!)

best of luck to everyone!

Suzi

Suzi, sorry you had reactions.   But glad they got them under control.  My day was very uneventful but long. We arrived at 9am to see the Oncologist....lots of waiting as they were veyr busy...had my port accessed and started my first infusion at noon or so.  My complete TC was done by 4pm and we headed home.  I had no SE or reactions at all.   I have great appetite tonight and no metallic taste--I know, it will probably come.  I am drinking like a fiend so I am emptying my bladder a lot.  Rinsing down there too......no burning noticed, but I don't want to notice<g>.  Also using the mouth rinse.   Doing all I can to prevent SE.   I also started taking Colace yesterday just in case....at least until the diarrhea begins.   Oh joy the fun this is!!!!  And thank you for the web sites for Plano...I will drive anywhere in the Metroplex beleive me!

 Shoshana, hope you are doing well today. 

 Fullcircle4 and Jen, may you have some rest tonight and a very uneventful day tomorrow for your infusion!

We CAN and WILL do this.   And be very OLD ladies someday......remember that is the goal<g>.

MaryNJ,

My reaction started with my tongue tasting weird and then feeling funny with a scratchy throat.  The nurse explained that the funny taste is not that uncommon, but then I felt like I had too many teeth in my mouth and my lips were tingly.  It's a similar reaction to my aspirin allergy so I knew what was happening and knew to tell them it was progressing.   The good points were that I was really close to a hospital (50 yards), that the progression was slow and that we had to stop and start but made it through!

On a funny note, my husband suggested I use my "cranial prosthetic" prescription for a Klingon forehead piece!

Z

(sorry, sometimes I sign my name with just a Z -- my husband misspelled my name once & I became Zusi)

Hi MaryNY,

Yes its TC they call it DC here on the paperwork. At first they were going to do AC then T but my onc. put the word out to a group of other Oncologists and consensus was not to do the same regimen as I had last time. My first cancer was on my left side and this is on my right. My left is still fine and this is a completely new cancer not a spread of the old one.

I realize there are 2 Sept 09 threads but there are too many people already there. There's not a hope of trying to figure out who is who. I'm also not real comfortable in a large group. My second tx will be on Oct 7th so thats not too far off (also have been through it all in Dec 07 anyway)

Sido I carry the brca1 gene, I hope your insurance covers it. Things are so much different with chemo now & the meds to take to make sure we don't have nasty se's. I'm sure it was horrible having to deal with your mum going through this 20 years ago, but I hope you will have little or no side effects {{hugs}}

I'm torn what to do about my hair... I shaved it last time the moment I lost 2 clumps of hair the size of a quarter. It was exactly 2 weeks from my 1st tx. Well I was hoping things would be different on this treatment but nope.. Sunday night I noticed the tingling of the scalp and today I'm shedding like a dog in spring. Also my scalp hurts.. so no difference between buzzing it and having it longer. I will do something this week I guess. I have a really good human hair wig that I bought last time and then went out on Monday and bought a nice synthetic inverted bob in auburn with highlights in it for fun. I have a few others that I will donate back to the cancer agency (thats where I got them from) they offer them for free to chemo patients. Most Cancer Agencies can direct you to a place that offers them. You never know what they will have. I got an ok human hair wig from them.

 For the record I will be doing 8 chemo's, rads then skin sparing double mast with immediate reconstruction...don't know what kind yet as I haven't had a chance to meet with the plastic surgeon yet..just the surgeon.

Lol enough now, Hugs Suz

I'm happy to hear that everyone is getting through their treatments ok - and getting through any obstacles they may encounter along the way!

Txstardust I'm sending you lots of negative node energy!!!  LOL! Good luck tomorrow!

Suz45 I'm getting my treatment at the LGH Oncology Clinic run by Dr Klimo. 

So far it's been a rocky start trying to get a time booked.  It's so sad but they are so busy there.

I had my orientation yesterday and found out that I will be doing FEC x 6 and having Neupogen injections as well.  Unfortunately Neulasta is not covered by my med ins and the cost is overwhelming at $2700 x 6. 

I've been given Kytril, Decadron, Maxeran and Stemetil for my anit-nausea medications.

I was told that the earliest I could start my treatment would be next week.  Everyone has been on high alert and with that news my daughter and I planned on going away on a volleyball tournament this weekend and my husband is taking my son on a golf tournament this weekend too.

But as Murphy's Law would have it I got the call this afternoon to start my chemo TOMORROW!! 

There was a cancellation and so they called me to see if I could come in.  I feel so sick over this but I had to say NO. 

Did I do the right thing?

I just couldn't ask my family to cancel something for me again (we've already had to cancel our annual family vacation because of my MAST) and I didn't want to stay home alone without family support - I didn't want to do either so I said no. 

So I'm back to waiting for the call to start next week!  Once I get my start date they'll add me to the regular schedule and I'll get my dates. 

As for supplements I told my orientation nurse all the ones I was taking and she didn't say anything to me about stopping them.

I take a Daily Women's Multi with Iron, 2000 mg of Vit D, 600 mg of Vit B Complex, Acidophilus, Red Reishi and Cold FX every day.

When I see the oncologist next I'll ask him if I should continue with these - I'll be sure to post what he tells me.

Oh Suz45 I did do the LGFB workshop at the BC Cancer Agency and it was wonderful.  I enjoyed the workshop, the volunteers were great and I loved all the goodies I got.

I highly recommend going to one if you haven't already.

Have a good night everyone!

ps - yes Delaine I'm still up even though I said I was going to bed hours ago!

Good morning Everyone!

Mine is a ridiculous tale of karma biting me in the butt, I think.  I have had 2 breast REDUCTIONS.  Probably a misunderstanding with my doctors about the definition of "reduce" - I thought it meant make smaller (and higher)!  HAHA.  In any event, even though I was still a 34 DD, how could I possibly have enough breast tissue for there to be cancer (the 2nd surgery put in small implants to hold them up)?  Well, I guess my girls were pretty resilient.

My mom and 2 of my sisters are smokers.  They don't have BC.  But since this happened to me, I have done some thinking.  My mom had a hysterectomy in her early 30s; and so did my next youngest sister.  The third is in early menopause.  (Youngest half-sister is 20, so too soon to tell with her).  I am the only one with estrogen!! So much for clean living!

So I find the lump in June - the first week of my 5 week vacation in San Diego. It felt like a little marble, round and smooth.  Slight panic attack.  Then I figured it was a cyst and I would talk to my doctor when I got back.  Drank my way through the next 5 weeks.  Saw doctor.  Diagnostic mammogram, ultrasound, ultrasound core biopsy, then diagnosis.  IDC in left breast (which, according to a silly Facebook application "What are your boobs nicknames?" is now called Venus). Took me about .3 seconds to tell my surgeon I wanted a bi-lateral mastectomy with immediate reconstruction (even though she was leading me down the lumpectomy path).  I didn't want radiation because I heard it could mess up the reconstruction results.  One MRI, one PET scan, one PEM scan (this is a new one that is a PET scan design specifically for breasts), another ultrasound on right breast (Serena), MRI core biopsy on Serena (negative), mastectomy, reconstruction with tissue expanders, necrotizing tissue on Serena (think she was jealous of all the attention Venus received), 3 hyperbaric sessions, 2d surgery to remove dead tissue from Serena, AND HERE WE ARE!!  My plastics doctor is the greatest of all time.  Saved the expander.  It doesn't look pretty right now, but he assures me they will be the greatest, most technologically advanced breasts known to mankind by the time he is done.  More about him later.  But anyone in, or near, Arizona let me know if you want his name/number.

My oncologist is great.  He is encouraged that there was no lymph involvement.  But, since my tumor was aggressive, and due to my age, I get lots and lots of chemo.  And then tamoxifen.

I feel like I'm in the lull before the storm.  I am really anxious to start treatment on Monday.  But I am also dreading it.  I don't miss my breasts at all.  But I am really scared about my hair.  I made my poor oncologist look at my eyebrows to "verify" that they are great, and to reinforce that I didn't want to lose them.  I also asked him about botox (answer is NO while on chemo).  He thinks I'm insane I'm sure.  I sort of had a little freak out on him - What?  I will be fat (from steroids), bald, boobless, my face is going to fall, you want me to take my nails off, AND you want me to "limit" my drinking?  What else will this disease take from me?

So now that you know my story (and a lot more than you wanted to know, for sure!), here are my current questions:

When do you start taking the Claritin to help with the Neulasta side effects?  I currently take Alavert for my allergies (the same ingredient as Claritin), so does this count? 

Is it true that eating popsicles or ice chips while you are getting the treatment will help with mouth sores?

What about vitamins or antioxidants?  Do they dilute the chemo or protect the cancer cells?

Thanks to all for listening.  It actually feels good to have another little freak out (even if its only written)!  My kids and husband have been really good, but I just don't want to unload in front of them.  I promise I will try to be less verbose in future posts!  Have a great day!

Laura 

Neupogen and Neulasta are used to boost WBC.  The difference is the Neulasta is a timed release 1 shot injection and the Neupogen is 7 shots over 7 days.

You usually get the shot after your chemo treatment - mine is scheduled for Day 3 after chemo.

They are both about the same (cost wise I think the Neupgen is $200 less) but one is less "poking" than the other.

Marie..I think you did the right thing...waiting until next week is not going to change anything. I did the same thing.  When they called to schedule my port last week, she said we could start Chemo the next day.  I said no, we can start next week...I want one more 'good' weekend!

Mary--Neupogen and Nuelasta are White Blood Cell boosters.  They tell your bone marrow to produce more WBC which help you fight off infection.  Neupogen is the first generation and you take multiple shots in your belly I beleive...maybe 4 or 6 little shots.  Cheaper because it is older.  Neulasta is the 'new' kid. One shot and it works its magic.  Thus so expensive.  I beleive it works quicker too.  Both cause long bone pain(where the marrow works) and I have learned on here that Clariten seems to alleviate that pain for whatever reason.   Neither will help with nausea but will keep you healthy if you need them.  Not everyone needs them.

October 1st ladies...hang in there. Long day but you will be fine.  Drink, drink, drink....water with a gatorade or two thrown in there.  You want to be peeing A LOT the next few days.

I feel good today....strung out by the steriods but no nausea.  I set my alarm to take my zofran at 7.5 hours after last dose and stayed in bed for 30 minutes after taking it.  No appetite this morning but ate my activia, took my colace, decadron and tylenol....no weird tastes, just the yogurt didn't taste 'good'.  Still drinking tons and finally starting to let go of some of that water<g>.  I was a bit puffy yesterday but got up like 4 times during the night to pee, so I guess my body said ENOUGH!   I am going to go run some errands.

Have a wonderful day ladies and remember....it is okay to be sad every day, but only for a short period (I give myself 5 minutes if I need it).  We will get through this AND we will be live to be old old old women!!!!

It seems like most of you have a prescription for nausea?  I am relatively sure that they put something in my IV bag of fun, but I don't have anything in particular to take at home.  Should I ask?  Or is it because my chemo combo (TC) doesn't require it?  I have phenergan from my surgeries, but don't want to take anything if the oncologist doesn't give it the ok first.

L