January 2013 chemo group

MandyNJ  My anti nausea cocktail is Zofran and Decadron for days 2 & 3 after chemo with Compazine for breakthrough nausea (up to every 4 hours), Ativan for bad breakthrough nausea/night time restlessness, and compazine suppositories if I ever start vomitting.  I have never needed the suppositories.

Jules: I was a mess, in tears, even after I thought I had processed everything.  It turns out, I learned that the treatment/chemo will make you feel that way.  It's a side effect of it. Once I learned that, I was able to cope with it, knowing it was a side effect.  I would tell myself "we'll discuss this when my treatment is done" to myself.  I became much better.  Also, some days I would (only once in a while) take a Percoset.  If I became real worried at home, I would take that and it would take the edge off.  I still have tons of everything left, so I was careful to only use once in a while.  

I used to cry when talking to someone but then eventually learned how to say things without getting emotional about it, almost in 3rd party format.  It's hard to convey, but if I would instead of trying to relive the moment that I am talking about to someone, but instead talk about whatever it is (without reliving it), I woudn't cry.

It's a tough road for sure.  I don't think there is any normal/not normal.  Everyone's system is different, and we all handle things different ways, according to the way we learned to handle things before this.

I wonder if your 45 is just that they haven't converted the number, and you are 4.5.  I've seen bloodcounts relayed in different units of measurement?  If so, you are right where I was.  I was always a 4.0 (and one time a 3.0) going through chemo.

Have a nice day - we are all here sending you positive vibes!

- chemo and sadness

Jules - this might help you.  Straight from wikipedia:

Pooled data of all triple negative subtypes suggest that with optimal treatment 20 year survival rates are very close to those of hormone positive cancer.

So apparently, we have 20 year survivors!  So many in fact, that they were able to do a data analysis between us and ER+ cancers!  I think of this when I get into those thoughts as well.

How many rounds of CT are you doing?  Congrats on the half-way mark coming up!  Are you having radiation?

Woo Mandy been there. I won't go into the embarrassing details but I went for a very horrible ride on the can't take a &hit train. I now take a probiotic every evening and have not been constipated since. I talked to my mo and she told me that taking the probiotics was fine.

Shannon - so well said!  We all have to follow our own path...I am definitley a do it yourself, find a natural remedy type girl, but I agree about going after this with all that's available to me, traditional, natural, etc. CHECK!

bcfree - with SEs, I have found from my 'chemo journal' that I am experienging the same things on nearly the same days yet this round they are a bit less severe.  I feel really fortunate about that, so I think the cumulative effect is individual and I'm sure also the type of drugs and time between them.  I also get accupuncture from a Chinese MD who specialized in oncology - once I tell her what I'm experiencing she seems to know which needles tone things down...she likes to take any SEs from a 10 to a 2.   Again, not the approach for everyone but it is working for me.  Keep doing what you're doing with creating positive thoughts...we've all had those dips and you'll get there!  

Mandy...not sure if this will help for the next time, but I asked for Emend in my IV...I learned that some of the drugs like Zofran and Compazine act on the digestive tract nausea but Emend works on the neurological response nausea...I have an issue with vertigo when I sleep and wasn't sure of the chemo impact so I requested the Emend...have not had any nausea and am not taking the drugs afterward.  Also, with the colace, I've heard that can take up to 3 days to kick in so maybe it's still going to work, be prepared

For the protein seekers, I switched over from my soy and whey mixes to a Vegan Rice Protein...it has 12g per tablespoon.  I put 1-2 scoops in a smoothie with some Fage yogurt so it really packs a punch.  Vanilla or chocolate flavors, but the vanilla has no added sugar. 

Oliverhog - from an earlier post, yes I am in the Chicago area...in Bartlett

Nicole, I  developed a hemmorhoid a few years ago and started taking something called 'Leg Veins'...it was recommended by a friend and after taking it I didn't have any issues. Not sure if that would help you at all now or in the future.  I typically take it ongoing because I take long flights for work and am also a runner so I figured it would help those areas as well.  

skimommi, I'm jealous about your fondue that sounds so good!  

Hope49, thank you for sharing with me the information. Hope all of us have minimal side effects!

I am not triple negative but I just read a very interesting article about advancements in cancer treatment, and one of the stories was about a drug called olaparib...in clinical trials for TN with a lot of promise. Article talked about the new genetically targeted drugs being tested and developed...the future approach vs. a lot of today's chemo which is more 'one size fits all' (yet it doesn't). It was very encipouraging to read about all the advancements on the horizon, and how far they've already come, one of the nurses said when she started out, they used to hospitalize people for chemo! Feeling lucky to be living in these times and hopeful about the future

hope49, I've lived here for almost 14 years and prior to that I lived in the Louisville area.  Maybe I should get the name of your hair stylist!  I drive 90+ miles to have my hair cut/highlighted, when I have hair, that is.  I've been going to her for 14 years and as soon as there's something for her to work with (more substantial than emu fuzz) I'll go back to her again.  

I would love to hear your favorite food stops - my husband and I are always looking for new places to go (we get in a bit of a rut).  

We're having a beautiful day here and it's supposed to get nicer in the days to come.  I just had an infusion so perhaps I can writhe in agony in a chaise lounge in the days to come (I'm kidding, I haven't writhed yet *knocks on wood*). 

Heading to the bar tomorrow after a quick stop at Onc's office.  Got my Battle Bag packed and all the electronics charged and ready to go.  Onc is adding a second nausea med to my pre-meds and has me taking Reglan twice a day starting day after chemo for 3 days, so hoping for a better post day 3.  Dreading the mouth tenderness and taste changes and the numb bottom lip, but I guess it could be worse.  After tomorrow I'm a 1/3 of the way through.  I know we aren't supposed to wish our lives away, but really looking forward to the next 15 weeks going by fast and then the next 6 of radiation, and the next 9 ,months of Herceptin.  Ready to just take a couple pills, I hate change and I hate inconvenience.  Wow, I can tell I took my steroids today, my inner bitch is coming on strong. 

LeeA - So jealous you can sit outside in the Chaise Lounge.  This morning we had a snow storm that was supposed to be rain and got 3 inches of snow.  Granted it was mostly gone by afternoon when it warmed up to a sweltering 38 degrees.  But tomorrow it is supposed to be 50.  I'm so hoping my time at the bar doesn't last 6 hours like last time and we can get it done in the 4 it's supposed to be.  I would love to spend a little time out in that nice weather.  Even supposed to have some sun with it.  Of course, this is Ohio, so we could have a freak snow storm.

Good luck to everybody and I hope everyone gets to feeling better soon and I hope we all suffer minimal SE's in the days to come.

Cancernoway, good luck tomorrow! I agree with you about the time passing...I'm always so conscious about appreciating 'today' but in this case, I want the next 10 months to go by quickly! I made a post it cube to count down each day for a year and every morning I tear one off and throw it out, watching the cube get smaller makes me feel better. Are you chewing ice during Taxotere? Sorry if I missed that on an earlier post...it is supposed to help with the mouth issues .



LeeA, I'll have to PM you my fave food spots

cancernoway - bets wishes for an uneventful day tomorrow.

Oliverhog - Thanks for the good wishes ...

MandyJ - I had the same problem. Not comfortable! This time I plan to cut back on the Zofran by day 3 or 4. I drank Miralax in the morning starting day 5 (waaaaay too late) and took two Ducolax at night as well for a few days to get back to normal. I cut back on both after a few days. Starting tomorrow I'll take Miralax while I take Zofran - will add Ducolax if it isn't enough. No waiting this time! Bryonna, Nicole, and Sheryl were very helpful advisors while I learned to poop again as well as deal with heartburn : ) I hope you find the combination that works for you very very soon!

May everyone have a restful comfortable night. Prayers for all - I feel so fortunate to have found all of you. I've learned so much in the short time I've been around you.

Martha

cancernoway - okay, I admit it.  I LOVE YOUR NEW AVATAR!  Is there a story behind it?  I'm on a laptop but from what I can see of it I'm taken back to a much kinder, gentler place, i.e. the SEVENTIES!  Ha ha. When cancer was just a word I had heard and Lay Lady Lay was a song - not something I would be forced to do following a trip to the house of cards and plastic bags.  

I'm chuckling at the image you posted but I'll be darned if I get it!  But hey, laughter is the best medicine.  Even the inane type I do most of the time, you know, the kind that borders on hysteria...they're coming to take me away, etc.

Continuing on that weather - well, I'm not on the chaise lounge yet.  We'll have to see what the weather does and first I'll have to vacuum it and I know darn well I'm not going to feel up to vacuuming but I'll get paranoid about the pollution particles that have undoubtedly invaded the fabric since early Fall and then I'll probably just end up looking out toward the lounge from my girl cave aka the master bedroom. 

I'm wistfully (wistful is my middle name on this crackiest of crack monkey nights - sorry ladies - steroids by the bag) remembering those rare February days in the Midwest when the temperature would spike and everyone would get a good taste of late Spring in late Winter.  I grew up in a suburb of Chicago and then spent 20 years or so in the Louisville area so I know winter well (and I sure don't miss shoveling).  It does get cold here as well.  I had to bring in one of my somewhat rare succulents two nights in a row this past week.  

hope49, thanks for the PM of your favorite food spots!  Screenshot and filed!  

Paula, so, so glad this number four is treating you better than number three did!  I recall reading something strange about chemo and thighs not long ago.  Maybe I can find it in the archives here.  Or maybe it was regarding Herceptin (I know that's not in your chemo-mix). 

Jubby, I hope you're on the upswing soon!  You're about 17 hours ahead of me (I think?) 

Hi lovelies



I'm in the ac 3 hole so I'll be brief. It's day 4, so really brief, and probably nonsensical.



I've enjoyed reading your posts and I share the humour but can't commit any of my own right now, though I do appreciate reading it. Stories are heart breaking and encouraging and comforting and petrifying, why ar we going through this?



Re BRCA have you heard of p53? Apparently having mutated or no p53 (i cant remeber but its a gene test) gives people a higher risk of cancer in general. It's a next test that I've heard follows brca testing here. It can give an answer as to whether radiation may trigger cancer later apparently, amongst other things.



Happy days



Xx kk

Bryona, I hope you rebound quickly.  Big hugs from a few states away.

kiwikid, it's good to hear from you.  I have not heard of that gene but it sounds very interesting - especially the radiation part!  Thanks for posting it and wishing you better hours and days ahead. 

Skimommi, you are quite welcome.  As long as I can still pull it out of my memory bank I'm happy to look for the information.  I've had a few "drawing a blank" moments in real life and it scares me but I've heard other people describe it as chemo brain so I'm not going to get too worried about.  Example: I'll try to think of some actor's name or the name of a song and I go blank; however, in other ways my thinking seems more organized than usual.  Strange.  

--

And since I'm hyper (thanks to bagged steroids) I'll mention something else I've noticed since chemo:  cuticle improvement.  Now, this might be due to using the Sally Hansen nail hardener but maybe not as I had those two little skin things on each leg flatten out.  I've always had annoying cuticles - even as a kid.  Maybe the chemo attacks the rapidly growing cuticles?  Who knows.  I mentioned the two leg bumps to my oncologist today (I see this as a chemoprovement) and he mentioned the steroids but I only get them in the IV bag and I was on a round of steroids back in 2001 and these little bumps didn't go away.  Anyway, I remain curious about all the body changes during chemotherapy.  

I see a spider crawling across the floor.  Since having breast cancer I'm really not liking the idea of doing away with spiders.  I don't like killing anything but this compassion for spiders is kind of a new one since chemo.  This may change when summer comes and I run up on a black widow (yes, we have them and they love garden furniture).  

Sorry to babble with my fingers, ladies.  I'm sure I'll go quiet and/or brief within hours or a day or so. 

Wishing each and every one of you well.  I think about all of you/us and keep you close in my heart...

Happy Valentine's day to a group of real troopers!

jayjayc - thanks for reporting on those positive skin changes of yours!  Hmmm, you are on Herceptin as well.  I wonder if there's a connection there?  I remember the MO saying that Her2+ cells are like a house with the lights on 24/7.  I wonder if the Herceptin goes in and starts turning off the lights on other cells as well...

And I'm a bit high-strung as well!  (No, really?? )  

I think the walk is a great idea.  TonLee (on the triple positive thread) swears by exercise to keep the lymphatic fluid moving during chemo.  Re: stairs - when I park at the cancer center I always take the stairs.  I figure I need every bit of movement I can get on the days when I feel like moving but when I came back up the hill to our house this morning during my walk I sure did feel exhausted... and that was pre-infusion.  I can make much better time at the outdoor track at the YMCA which is blessedly flat (and has pretty nice views).  

Good luck over the next few days!