April/May 2012 Chemo hang out

Rose12

I had my first round last Thursday all was good. 5 days later came down with thursh? I don't know if it was from the chemo drug Taxotere/Cytoxan or the steriod. Is anyone else taking Decadron(steriod) or some other kind of steriod? Would like to hear. I really had a hard time taking the steriod drug. I do not like it at all.

Stacie

I passed on cold caps, high dollar wigs, and mani pedis and spent my $ on a maid to clean AND organize my house weekly. When my treatment is over, my home will look better than it has in years...

IndigoMont11

@Velutha - what's an onco massage?

Anonymous

Hi ladies!

I hope I'm not barging in here. I know I'm not part of the chemo crowd, but I want all of you to be given every chance to get through this with minimal side effects..hope you don't mind me sharing!

No nail issues with AC, just the "T" (taxane based) chemos.  If you want to wear sandals in the summer, I'd ice your toenails as well. If you've ever lost one, you know how long they take to grow back--about a year. I did all 20 nails and they look the same as they did pre-chemo. I also iced my brows and lashes--and they thinned but didn't fall out all the way.  

I disliked having to have any steroids in me at all as well, but didn't want to take chances on an allergic reaction and then a delay in chemo infusions. So I sucked it up after my MO reassured me that it's a very, very small amount and that weight gain or moon face wouldn't be an issue. Some ladies are given steroids to take by mouth before pre-meds, but I didn't have to do that.

For the first 4 tx of Taxol I had to take decadron by mouth...the T drugs can really cause an allergic reaction.  I took 20 mg  the night before the first infusion, 15 the second, 10 the 3rd, 5 the 4th and ended. To be completely honest by the second infusion I was pretty sure I wasn't going to react (I am not allergic to drugs at all) so I just stopped taking the by-mouth decadron. And I didn't have a reaction.

RE wigs:  I spent about $300 on one (paid by insurance) and then never wore it...just didn't look like the new BC me. I bought one online for $129 and it was so much better, when I needed to use it for nice dinners and to wear around my daughter (she was upset enough and couldn't handle seeing me completely bald).  

To the poster about DD AC (4) and Taxol (12): I had the same rx.  It isn't a lot--it's about par for the course if you are anything more than stage 1, and your grade is pretty aggressive so I wouldn't expect your MO would go with anything less. Some ladies have gotten AC DD (6!) and 12 Ts...

Finally, I didn't get mouth sores at all, but I took L-lysine. It's an amino acid supplement that is given for this very thing.  I also used a natural toothpaste brand that didn't have sodium laurel sulfate in it, which can aggravate mouth sores.  Just don't buy the cinamon flavors: my mouth was sensitive throughout chemo--because cinnamon can really burn some!

Happy Saturday! Remember to do something nice for yourself when you can, even if it's just watching something funny on TV.

Melrosemelrose

Rose12- My first infusion is this Tuesday April 24.  I'll start taking the Decadron on Monday, first dose Monday morning.  I've read on one of these chemo threads (can't remember which one) to try to take the second dose not too late in the evening because it tends to make you stay awake. Hope you let your onco know about the thrush so you can get it treated and under control.

Stacie - Great tradeoff & so much easier on you and your hubby!!!!

Melrosemelrose

Claire & Velutha- Love you--- thanks for coming to this thread!!!!  Please keep coming back--- we need you and Velutha to give us a heads up on this part of our journeys that we are entering. 

IndigoMont11

Morning all! Yep, I can attest to the decadron keeping you up. I was even kind of scared to go to sleep last night because I was afraid I'd feel worse when I woke up. Anyway, since they didn't actually give me the compazine yet, I took an ambien and did sleep about 6 hours. So far I don't feel any worse and the ear ringing is quieter.



My dogs are funny; they always know when something is wrong, but I've taken a lot of heart from their behavior up to now; once I was up and around after my surgery they asked me to be fed and let out before asking any of the guys, which made me think I'm okay. Yesterday, though, our younger dog, who's normally so kissy and licky we have to make her stop, wouldn't even lick my hand. I guess she could smell the battle juice.

Dianarose

I have a feeling I will be joining you all as well.

Hi Sandi- I have been wondering about you. My lx didn't work out. I am 10 days out from my bmx and more positive nodes. Just the same my Mo did the Oncotype test. I don't know the results yet, but I am assumming I will be joining you.

IndigoMont11

Hi Diana - you're in good company. The discussion threads left me very well prepared, I think, for my first chemo yesterday. I know everybody's experience is different and keep that in mind, but I would have been so much less confident and more worried without the ladies here and on the March thread.



Day 2 tx #1, so far so good ( as in, no nausea and I did sleep). Took all the meds faithfully at the allotted time and ate half a high fiber english muffin and some unsweetened applesauce. Both seemed to taste like they usually do. I did get pretty heartburn-y early last evening and a zantac seemed to help.



I feel like the subject of my own experiment and it's hard not to think any little sensation is a side effect. Laughter definitely does help too.

Stacie

To sleep I took a claritan first, a xanax 2nd, and then watched a sitcom (King of Qeens), then I took my Ambien and watched another episode which I fell asleep during. I have a mood disorder so this was a preemptive plan to prevent insomnia which causes mood episodes in me. The 3rd day I dropped the xanax. Have had a great nights sleep throughout.

beth1965

Is anyone getting neuprogen shots?  I have to give myself a shot 10 out of 14 day chemo cycle. I have been having very painful side effects just wondering if anyone is having same experience.

Melrosemelrose

I'm getting my exercise bike today (YAY!) so I can pedal my way through chemo for my exercise.  My allergies are stlll bugging me a little which bums me since I'd love to walking outside instead.  Ahhhh.... Houston pollen......

velutha

Oncology massage is offered by my cancer center for $50/hr (and they won't take tips).  Basically, it's a massage therapist who certified in oncology massage -they are careful to use techniques that don't "release toxins" (b/c with tumors and chemo, moving stuff around will do lord knows what, per them, on chemo it will increase your SEs), and they deal with a lot of BC, so they know all about LE, as well as how to deal with post operative changes/healing appropriately.  After my BMX, I was worried about going to a regular massage therapist, b/c lying on my belly wasn't comfortable with the TEs and the port.  But the onco massage therapist just helped me position w/ pillows, no problem.  

I would just google oncology massage for your area or ask your MO office/cancer navigator.  It's a newish thing, so their professional association does not have a great provider listing.

There are also people who specialize in post-mastectomy massage, to help you prevent forming adhesions, etc.  I think that could be a nice to have thing, but I think PT has better evidence proving it helps.

Decadron/dexamethasone: I think most of us here are on steroids.  Yes, they suck.  They give you acne, make you puffy, affect your sleep, blah blah blah.  Yes they can make you susceptible to yeast.  But they are part of the deal.  For taxol, my MO cut back my dexamethasone after I whined.  For A/C, I think the protocol is pretty well established, I don't know if there's much chance of cutting back.  Do the best you can mixing your potions to minimize side effects, is all the advice I can give.  I hate steroids.  My MO thinks the younger you are, the worse they affect you.  That makes no scientific sense to me, but she's seen enough, she ought to know.  

TerriFe

I was diagnosed, Feb 27, 2012, while living in Dallas, Texas. My lumpectomy was March 6, my husband and I began our move to California March 23. Crazy time for a move!

I did see an oncologist before we left to have an oncotype ordered, the score was 38 with a 26% recurrence rate. The oncologist I will see is at Stanford Cancer Center, this Wednesday (April 25).

I have no idea what type of chemo will be ordered...I guess right now I am lost. I have so many questions and have no idea where to start.

Anyway this site has been so helpful, thank you to all the women that share, it helps   

Terri 

LisaG65

hi ladies! 

i was getting the neupogen shot in the office, i started them 1 week after chemo, i got it 4 days in a row, skipped the weekend and that monday, by tues 2 weeks exactly after chemo i had cbc and blood count was back to above normal. i didnt experience bone pain at all, i took ibuprophen and (I took generic claritin daily b4 chemo for allergies)  before shots and after later that day.

  i am in to my 3nd week post infusion i was having a constant minor headache, i never had many headaches before, so they are an annoyance but are tolerable, ibupro. doesnt help, nothing did, but last night i took .5 xanax and poof my headache went away. i havent experienced a headache today wished i had done that when they first started but i usually only take xanax before i go to sleep. it was nice to be headace free while i was awake  i just keep drinking a ton of water. eating hasn't been a problem. i eat when i am hungry.  right after chemo things did taste a lil off, but not terrible. i have been able to cook when i want and when we go out the only odor that bothers me is cigarettes and the smell of someone who reeks of smoking. I had this whole week living normal. no drs appts. no shots. my head is shaved. it has a lil tan going. some minor stuble after 3 or 4 days of shaving with a ravor, just the roots hopefully being purged. if it grows a lil i will be suprised, but will let it do its own thing and decider whether or not to shave it again based on how it looks. i really just want the lol stubbies to fall out. so i dont have to shave it. tuesday 4/24 2nd round of 6 TCH. keep going ladies!

LisaG65

i read somewhere on here a sister said she took L-Lysine to keep thrush and mouth sores away. i have been taking it 2xs a day since the day before chemo and have been sore/thrush free. it helps with tissue maintenance, collagen.

LisaG65

@stacie you go girl!! that is so great to have a maid!

dancetrancer

Rose - I had thrush.  Nystatin mouthwash and "magic" mouthwash (both prescription) alleviated mine almost 100% in about a day.  I'm still rinsing 4x a day (says to continue for a week).  

Indigo - I have the ear ringing, too, and it is also improving (11 days post chemo 1).  I did decide to get an audiogram to be safe and my hearing was perfect.  The audiologist said I can come back after each chemo to monitor it and make sure I am not developing any significant hearing loss.   

Beth - I am getting/giving self Neupogen shots since Thursday.  I took Claritin day 1 and every day since to prevent bone pain.  So far, almost absolutely no pain from the Neupogen.  It's amazing!  It decreases the histamine response.  

dancetrancer

LisaG, thanks for sharing your experience with the Neupogen - hoping my counts come up as quickly!  

dancetrancer

Lisa - do you know how low your counts dropped?  Are they going to start Neupogen prophylactically the day after your 2nd TCH or modifying your chemo dosage or anything?  Mine dropped so low my doc is considering lowering my chemo dose a bit.  He says the WBC is absolute confirmation that the chemo was strong enough to kill any cancer cells...maybe a bit too strong in my case.  We'll see - not sure yet.  I'm doing TCH, too.  

beth1965

Thanks for the tip dancetrancer i appreciate it. I will try it this week.

dancetrancer

You're welcome Beth!  In case you want to read more, there is a clinical trial going on about it.   It's for Neulasta, but the principle is the same.   I printed this out and gave it to my onc.  He was impressed, especially when I didn't come in cursing at him the next day (as he warned me I would).   I hope you have similar good results!  

Stacie

My eyes keep watering. Annoying!

IndigoMont11

Hi Lisa! I've been bothered by headaches since my treatment yesterday and realized this afternoon that there's a label on the Zofran that says it can cause headaches. Tylenol doesn't do much for me and I don't have Xanax, but based on a suggestion from someone else, I tried one of the Tramadol left over from my foot surgery. Followed that with a nice warm shower and so much better.



I only have the Zofran through tomorrow so it will be interesting to see if the headaches continue beyond then.

IndigoMont11

Btw, about being bothered by someone who reeks of smoking - I keep running into them at the doctor's office. Two men recently who smelled so strong, I could practically see it puffing out of their clothes. I have got to remember not to get on the elevator with one of them again.....

IndigoMont11

Hi Stacie! My eyes are a little watery too, although for me that does happen sometimes. I'd thought chemo tended to dry eyes out - and I've heard that watery eyes especially while sleeping can actually be a symptom of dry eye. Maybe try some drops and see if that helps. I've put away my contacts for the duration, too.....

dancetrancer

Stacie - I've heard that's from the Tax and is actually due to dry eyes (the eyes overwater to compensate for it).  Someone posted somewhere a certain type of eye drop that helps - don't recall the name, but it was NOT a Visine type of drop.  It was more along the lines of a natural tear replacement drop.  

chapter4

Hi...we are on the same schedule...I started chemo 4/10. Also four weeks of AC followed by four weeks of T then a couple weeks off and then 33 days of radiation followed by tomoxifan for years. I don't know about you but days 3 4 5 and 6 after treatment were rough. Feel much better now...go back on 4/25 for second treatment and dreading the hair loss part.

C-squared

Hi ladies!  I'm another newbie to this discussion and find myself comforted by some of the similarities. 

Indigo- I started AC on Thursday (4/19) and actually encountered a nasty headache as the Cytoxin was being infused.  I have also heard that Zofran may be the culprit except that I had 7 rounds of Taxol before starting AC and never experienced a headache like that.  It was pretty intense night 1 and has been lingering ever since.  I was taking Tylenol every four hours until after receiving my Neulasta shot this morning and then switched to Ibuprofen to ward off the threat of bone pain.  I take Zyrtec daily for allergies anyway so I've got that covered.

chapter4- I've seen/heard this before and I'm hoping not to experience a setback days 3+.  I attempted to time it so I could rest over the weekend and work during the week.  It's a waiting game at this point.  

I do have an appt with my onc on Tuesday and plan to tell her about the headache.  I'll be interested to hear what she will recommend.  The Ibuprofen and Tylenol didn't do much but it was a headache like no other I've ever had before!

One down.., three to go!  That's my motto until my next infusion. 

LisaG65

@dancetrancer hi!!

on 4/3 my blood draw right b4 chemo #1 my anc count was 5.6.  we waited 7 days and did cbc on 4/10 my anc. count was .4 it dropped very low. i got a nuepogen shot that day tues/weds/thurs/fri.  I went in for cbc on 4/17 my anc was up to 9.3 well above my baseline.   they tell me the anc is what they moniter, i have access to my chart online my wbc 4/3 was 8.1 on 4/10 1.6 on 4/17 12.7.

i hope that made sense when i go on 4/24 for my 2nd round. i am sure if my onc has any concerns we will discuss them. i love being able to see my chart, check with your care provider and see if they offer that option. i have access to all my labs, pet, muga etc...all in one place.

i carry eye drops (tear replacement, generic from the dollar store) to moisten eyes, not the kind to remove redness, always have, i use them frequently, they really do help. i have some in my purse, chemo bag and next to my bed.

thanks for all the tips ladies