April/May 2012 Chemo hang out

IndigoMont11

Stacie, my heart broke for you a little bit - family stuff is the absolute worst.  DH doesn't even talk with his family any more (looong story) and it is so sad, although I understand.  I hope you can now just focus on healing and coping without that added stress.  I told DH about the tornado on the day of your treatment - still can't believe you had to deal with that! 

Anonymous

Hi Apr/May ladies,

Just wanted to give you all a big cyberhug today.  I know all of you are in various stages of chemo,either coming up on your first one or moving into the routine with at least one or two behind you already.  Just know that the side effects are temporary, the discomfort from ports and surgery is temporary, but that you are buying yourselves LIFE and lots of it by doing what you are doing right now.

I didn't want a port at first but truly appreciated mine by the end (16 infusions total). I kept it and am going to use it in a piece of recycled art later this summer...I know, weird. My surgeon used the jugular vein in my neck for access to my heart--my port was above my left boob (the uninvolved one) and yes, that and the port stuck out as I am thin, but I didn't care. To me it was my combat wound and I was proud of it, weirdly, since it was proof I was fighting.  

The worry about everything will wear you down. Disseminate what you read or simply don't read it all right now.  My MO was so great I could ask her anything, and my surgeon and RO were accessible (one by text!) and I went to their expertise when I was worried about something.  

The hair thing--I was told and read that 10-14 days post first chemo it would begin to go. Well, proof that our hair doesn't follow a schedule, because it didn't start falling out till around day 19, and I kept it till at least 10 days later. It usually doesn't fall out in "clumps" unless you pull it out!  Mine was more like an overall shed, like lawn clippings.  I was glad I had chopped it short beforehand to cut down on mess.  

My husband shaved my head like an Army private. I did cry and HATED it, but looking back, like labor, I can tell you that it was 4 months of baldness only...then it began to grow back quickly about #7 taxol tx.  So all in all--not a long period, although it felt that way at times.

Mostly tx was just tedous. Radiation is tedious now, every day for 5 more weeks...but seriously, infusion felt like I was watching glaciers recede.  Every single time. Waiting, waiting, waiting, and the drip is slow freaking slow!  But time does pass.

You are all strong and can do whatever tx is recommended for you. I am humbled by the collective strength of the women on all these boards, and see that strength as an army, getting me through BC world. I hope you can see that, too.

XO

Claire in AZ

PS Of course I have to remind all of you that regular exercise reduces SE of chemo, sometimes dramatically...and drink water the day before/day of/day after chemo--at least 80-100 oz. You'll feel better during txs if you do these two things, I promise

sandik

Went in at 7am for my pet scan. I must be getting used to being stuck all thr time, because it was a piece of cake. Too a nap while I was waiting for everything to circulate. Didn't hear from them, and today is Friday of course, so nothing til next week now. Cross your fingers.

On my way out. Taking the photo booth to a fund raiser for a little girl who has an inoperable brain tumor. We think that we have it rough. Can't imagine how scary this would all be if I was 7 or 8.



Hope you are all doing well.

dancetrancer

For all who are getting Taxotere and have planned to (or are) chewing on ice during the infusion to prevent mouth sores...I did this, but the crushed ice at my facility was pretty chunky, so I couldn't really get the cold distributed evenly ALL around my mouth.  I do not have any mouth sores, but am on the verge of getting one on the roof of my mouth and behind my lower lip.  I've been using the magic mouthwash from my doc (I had thrush, too) and keeping it just at bay.   They feel sore, then I do the wash, and then they seem better for several hours.  No actual open sore I can SEE.  Just kind of more red.   I can just feel something brewing.  So far, so good...fingers crossed...  Soooooo...next time I am stopping by 7-11 and getting their really crushed ice (like for the snow cones) and putting it in an insulated cup.  I will be VERY sure to swoosh it all around my mouth.

I was so miserable last time doing this and icing my fingers (they were the worst) and toes while wearing cold caps.  However, it was only an hour and a half, not the whole chemo (cold caps are the whole chemo, but they are SO much easier to tolerate than icing the toes/fingers).  I'm so glad I did it 'cause these mouth sores would be so, so awful if they were worse!  (BTW, I take an electric blanket and heating pad with me to my infusion.  HEAVEN!  Makes the icing so much more tolerable.)  

dancetrancer

Sandik, you are SO right.  I can't even imagine being a child going through this.  Poor babies!!!

Best wishes for your PET scan.  I remember the anxiety of waiting.   I fell asleep waiting for my stuff to circulate, too.  Not much else to do when they leave you in a room with the lights darkened!!  

IndigoMont11

Hi all, one treatment down!  I am definitely getting a port.  IV stick wasn't fun at all - NOT doing it that way again.  As I'd thought, they didn't have an easy time with my arm veins and they explained that for A/C they don't like to use a hand vein.  Plus they said my hand veins weren't even that great anyway.  It took 3 sticks and 3 nurses and they finally just did it in my elbow vein.  I don't blame the chemo nurses - but I was NOT happy about the info that I got from the oncologist and the oncology coordinator.  I feel like they could and should have given me a better recommendation in regard to the port.  For another thing, the chemo nurses said that A/C is tougher on veins and so a port does tend to work better for that.

I guess I'll be going in early the week before my next treatment to get the port placed.  At least, my chest or the area where they will insert the port, I should say, should feel fine by then.  Even today it isn't so sore/sensitive like it was even a week ago.

Anyway, with the IV in my elbow I couldn't use my tablet, but oh, well.  The infusion part itself didn't take as long as they said - most of the time really was taken up between all the info they had to relay and trying to get the IV in. SEs so far - I'm actually feeling hyper (must be the decadron), and I did get that weird sinus feeling some of you mentioned, and the icky metal taste in my mouth - and just a little bit of a headache - but so far, nothing else.  I read everyone's posts about taking all of the meds at home on time as directed, so crossing my fingers that if I do that, my stomach will be okay.

Stacie, I must have sucked on I don't know how many of the Lemonheads, so thanks for that tip!   I'm glad I had them.  

I know a lot of you have said that the decadron kept you up at night - did they tell you to only take it in the morning?  

Anyway, I'm going to chill and try to finish Bridemaids - we only ended up watching maybe 25 minutes of it, as it turned out.  I see so many people say they come home from a treatment and crash - but if this is how it feels, I can see why athletes cheat and use the decadron.... guess the crash will come later.

Sandik - seconding dancetrancer's best wishes on the PET scan.  

Melrosemelrose

YAY INDIGOMONT11 !!!!!! You got that first treatment down!!!!  I'm up in the chemo chair on Tuesday.  Fun fun. 

IndigoMont11

Thanks Mel! I thought about you and our sisters - we are stronger together. Be glad you have a port; I have three big bruises and the one they tried on the edge of my forearm still hurts, dang it. I have got to trust my instincts - they haven't played me false yet. Ahhh, enough whining.

Laura5133388

Hi Dance, Hope your shedding is minimal! Even if it seems like a lot, it really isn't.

Can't believe I can speak of chemo in past tense, and before you know it, so will all of you

dancetrancer

Thanks Laura!  I just posted on the cold cap thread.  I know it's too early to tell, but I am hopeful! 

SadeSurvivor25

Hello ladies I was just wondering what do you use to ice your finger/toe nails? I didn't ice during my first treatment? I go next week for my second round of A/C and although my nails are fine I really do not want to chance it. I’ve been cleared by my BS for my breast prosthesis which is somewhat covered by insurance but I have to pay almost $300 out of pocket for them (prosthesis and 3 mastectomy bras) which is my deductible and coinsurance.

Also, I have not been checked to see if the cancer has spread to any other part of my body. I'm allergic to the MRI contrast dye but there has to be another way to check...isn't there??

Melrosemelrose

IndigoMont11 - You should check out my pretty right arm after one failed attempt to draw blood and the PET scan injection.  Like I said before, my arm veins here those nurses/techs and just go hide in my arms!!!!  Yes.... you have it right, we leave no one behind through each phase of our treatments and we are stronger together.

Melrosemelrose

SadeSurvivor 25:  I know the icing for the nails is during the infusion of the Taxotere or Taxol.  I don't know about the A/C infusions.  I'm having Taxotere at each of my infusions so I know I need to ice at least during the Taxotere part of each of my infusions. 

dancetrancer

Sadesurvivor - I may be wrong - but I believe the nail lifting issues are only for Taxotere/Taxol family.  You are getting Adriamycin/Cytoxan...I would check to see if nail lifting is an issue with those - I'm not familiar with them.  I also get Carboplatin, but it does not have nail lifting, so I do not ice during it.  Just the tax.  Trying to keep the blood flow (aka chemo) from getting to my nails during infusion.  

What I did was pack 4  baggies and DH filled them with ice at the infusion center.  I bought 4 little coolers (lunch size) for a dollar each at the dollar store.  Kept things cold and kept them from leaking.  Put my toes/fingers on top of 1/2 of each bag then flipped  the other half of the bag over the tops of my nails.  Some people buy actual "cooling gloves" or some people just put ice in a baggie at the end of inside a sock or mitt or whatever.  

Melrosemelrose

For the icing, you can also use frozen peas in ziploc bags.  You just refreeze the peas and reuse them.  Just make sure you mark the outside the bag to remind yourself not to eat them later on.. 

SadeSurvivor25

Thanks Melrose and Dance, my infusion nurse mentioned something about not getting my nails done because of fear of infection but if I just had to that I should go within the first 3days after chemo but I'd rather not chance it.

lsharvey822

Joining you guys for sure now (1st and 2nd opinions agree chemo is required).  I have "training"? next week so I'm assuming chemo will start the week after.  I'm getting AC DD x 4 then 12 Taxol?  does that seem like a lot for 2a grade 3 no nodes?  I'm 43 so maybe that's why they are going so aggressive?  Got the port in Wed and I hope everything goes that smoothly!  hey - a person can hope, right!?

IndigoMont11

Hi all - soooo: my chemo nurse said that if I'm careful I can probably get mani- pedi after nadir. I was thrilled but know common sense is necessary, so here's my plan:



I just got another shellac mani and a pedi 2 days ago, so I should be good really for 3-4 weeks. But since they won't check my WBC count until next tx, this time around I'll wait to make sure my counts aren't too low. If all goes OK, I'll do it either couple of days before tx or after, depending on how I feel. I am not going to let them do anything that involved cutting or scraping skin, even though I know they sterilize their metal tools. Also no dremels, although so far they haven't used them on me I switched from acrylic to shellac. And I'll ask them to use a new buffer and file - or better yet, buy my own at Sally's and bring them.



If I get a nick or cut somewhere they'd handle during a mani-pedi, i.e., hand or foot - I'll wait til it heals.



I know, maybe it doesn't seem worth it, but the shellac is protecting my nails so well, and I love the foot/leg massage. Oh yeah, not doing hand/arm massage on the LND arm, though. Just concerned about the LE risk there.

lsharvey822

Thank you for being here for all of us Claire. 

IndigoMont11

Hi Sade - my sense is that the PET scan is the one to check for more cancer at the point where we all seem to be. Guess that one doesn't involve iodine, right, Melrose?



FWIW, after I was diagnosed I had an MRI of both breasts and lymph nodes. I'd heard that MRIs are so sensitive they are notorious for false positive results. Well, in my case, the MRI showed my nodes were normal; as you can see from my signature line, that did not end up to be the case just 2 weeks later.

Melrosemelrose

Sadesurvivor25- It seems as though I have become allergic or hypersensitive to meds and dyes that I hadn't been allergic to in the past.  I'm allergic to the iodine surgical scrub.  My oncologist had to appeal to my insurance's initial denial of the PET/CT scan because I don't think the insurance review people knew that I am probably allergic to the regular CT scan contrast dye which has iodine in it.  PET scans use radioactive material that is mixed with glucose cost and cost more than regular CT scans an.  You might ask your oncologist about additional testing to see if there is cancer anywhere else.   

I also had a weird allergic reaction after my bilateral MRI.  My reaction was limited only to the left problem breast.  My right breast did not show any abnormalities.  The results of the MRI showed 3 suspicious areas and 1 suspicious node.  Two of the areas had very small DCIS, the other was a fibroadenoma.  The suspicious node was examined and removed during my sentinal biopsy.  I had 5 nodes removed-- all clean. 

SadeSurvivor25

That's what I will do. I just find it strange that they didn't order a different scan after the failed MRI attempt. I will be sure to bring this up when I meet with my oncologist. I've been debating on whether or not I would want to know. I just don't want anymore bad news but it would be selfish of me not to have them check.

Thx ladies

Melrosemelrose

SadeSurvivor25: - Every test is helpful for your medical team (oncologist/breast surgeon) so they can gather more info about your situation.  I had my PET scan yesterday and I told my oncologist's research coordinator not to call me today if the results were in.  I figured I can find out on Tuesday when I got in for my first infusion.  All of my doctors have been very upfront with me about my situation.  You may want to start a list of questions to ask your oncologist about further testing.  I don't know if you have already had surgery or having chemo first and then surgery. If you haven't had the surgery yet, the doctors may be waiting to do additional testing after your surgery.

IndigoMont11

Trust me, I understand about not wanting any more bad news. Once the MO confirmed the Stage III (ha, ha, thanks to BCO I figured it out myself from my path report), I didn't ask about prognosis, and he didn't volunteer it. I could figure that out, too, if I wanted to, but I decided not to go there. I freaked a little when he said he was ordering the PET scan even though he slso said he didn't expect to find anything. But one more phone call to wait for - that sucks worse than anything. But I also knew that refusing the PET wouldn't have been responsible. PET didn't show anything, just btw.



However - I keep getting reminders that I need both a colon cancer screening and a Pap smear. Mehhh - the colon screening is a little home test kit, no big, but I dunno - kinda feeling like enough already for now.



I'll be interested to see what your MO wants to do for you - keep us posted!

Melrosemelrose

I decided yesterday that I needed a break from all of this stuff this weekend so that's why I asked them not to call me today if they had the results.  I know if something changed my chemo date for next Tuesday, I would have gotten a call to tell me not to start taking my pre-chemo meds Monday morning.  I knew before my UMX surgery that I was having additional testing after my surgery. So it was a matter of making sure I got the right test that I could tolerate the contrast dye and just scheduling the test asap so i wouldn't delay my chem start date.

IndigoMont11-   I had that pap smear yesterday along during my annual gyno appt.  At least that is done.

SadeSurvivor25

Indigo, I'm glad your PET didn't sho anything. I will definitely keep you all posted.



Melrose, I had a BMX 5 weeks ago. I had cancer in the right breast and just decided to have them remove both. Thank God I did because 2 weeks after my surgery I found out that the left breast that looked "normal" on the mammogram actually had cancer cells in the nipple. I had 10 nodes removed with 1 being infected.

Neither my oncologist nor BS has said anything about testing for other areas. Being on this tread made me realize that and I'm due for my second infusion next week.

IndigoMont11

Hahaha- just remembered that when the pharmacist went over the meds with me, she wrote "zoloft" on the list. I am not on antidepressants so that took me by surprise. I asked her why the zoloft and of course, she crossed it out and wrote "zofran". On the other hand, while the compazine is on my list they didn't give it to me. Hmmm. Asking about it tomorrow.

IndigoMont11

Hi lsharvey! Hopefully some of the more medically knowledgeable ladies can chime in, but from what I've seen, it might be a combination of your age and cell grade. I'd be interested in what you find out. Best of luck to you! Hugs!

fairweather9

Hi Ladies,

Found out yesterday I will be starting chemo  4/27.  I will be having Adriamycin/Cytoxan (is that what everyone is calling AC?) X4.  After that my onc is taking a wait and see how this works out, which is cool with me as Tamoxifin apparently did nothing for the last 5 months but give me nasty hot flashes, would have thought all that sweating would have burned the cancer up but I digress...  Over the weekend I will be catching up on this tread and reading about this stuff they will be putting into me, also I will be having 14 rads treatments for my back.  Today my big chore is to get a date book to keep all this stuff straight.

Just want to thank everyone here for the advise I have already gotten, have a good weekend everyone, I'm off later for nice brunch (bloodymary's while I still can) and then a trip to buy a nice recliner to hang out in for the next few weeks.  Got my Xbox set up and plan to kick ass at robot boxing before all this is over, Tag name FairweatherNine if anyone wants to play on line we could form "Company Pink"

Later all

Marlene

velutha

@sade: PET scans aren't always necessary.  My nodes were clean, they don't typically go hunting for mets under those circumstances.  In fact, PET just made the list of top worthless tests MDs order. http://www.pbs.org/newshour/rundown/2012/04/top-45-ways-to-cut-health-care-costs-according-to-medical-groups.html.  If you are stage III/IV, then PET can be very useful.  Stage II?  Not sure, ask your MO.

@Lsharvey:  Did you have oncotype testing done?  Maybe not since you're a 2a, they sometimes go straight to chemo.  I am almost done with exactly that regimen.  Today, I think the worst part of it is it takes a long time (20 wks or so).  So set yourself up well, baby yourself through a/c, because you need to stay strong.  If you have people asking how they can help, start scheduling help at least once a month during Taxol too -they can bring a meal, pick up groceries, drive you to treatment, help with yard work, etc.  Get a housekeeper if you can to spare those taxol nails.

@Fairweather: Welcome!  Recliner is a great idea : )  I don't have an xbox, but I think your plan is great!

Nails: If you have bad nails already, icing your fingers for TAXOL (not A/C, that doesn't affect nails) may help.  I haven't done anything, except keep them short.  I had good nails, I'm almost done with 12 cycles, my nails look pretty good.  I made the mistake of gardening 2 weeks ago and 4/10 fingers have little streaks of blood in the nailbed from that, but they are still well attached.  If you have neuropathy from diabetes, I absolutely would ice toes and fingers.   12 cycles is supposed to be worst for SEs, vs 4 or 8, but that may not be true for you TCH'ers b/c of the other drugs.

I personally wouldn't bother with icing toenails.  You already don't circulate blood as well in your lower body, so the poison doesn't go there as well, and I hate being cold.  I had trouble just sucking on ice chips. 

Nails: There are studies showing that even at salons where they clean with good disinfectant, human skin cells, fungus, and bacteria are still in the water baths.  I LOVE pedicures.  But I don't want nail fungus, and my skin is drier on taxol no matter how much moisturizer I use, so I know there are some little cracks in my skin I don't see.  So I haven't been.  But go for it if you have good counts -my MO was ok with it on Taxol (not a/c), though some of my RNs said they don't think it's worth the risk.  I'm getting onco massages instead as my pampering routine.