Anyone starting chemo in June 08

wondering7

Had my number 2 AC on June 10. Went well. Took two less nausea meds c & a but kept the basic schedule fo the first day. Docs cut me down to one cytox in the am and one ativan for bed plus dacadron and emends Feel pretty good. Just waiting out day 3 am meds so my head will clear. Nausea mild.I don't do dairy or pasta this week so the side effects should be easier. Stick to rice. Keep protein up. Hair almost all gone. Tried on wig and scarves today and a couple of sun hats. I can pull myself together now. Need to dig out some earrings. No eyemake except for dark circles and a bit of eye shadow, but I have lots of freckles and blonde eyelashes. With my one headscarf I look a bit Amish. People smile at me. Someone else joked " Nice hat", but at least I am trucking. Check out all the chemo tips in tips thread. They really help. Am getting Neulasta tomorrow so My weekend will be quiet!!! Good luck everyone, I am around through late July. W 7

Stickerlady

Has anyone had real bad acid reflux? I had my first T&C on Monday and the acid reflux is so bad. I am so glad I'm not sick to my stomach though. I called the Dr. to see if I could take something stronger than Pepcid AC. Today I have the bone aches. I fly home at 5:30 and can't wait to get home and see me kids and go to bed early and sleep all night long I hope. I almost want to take a Vicodin so these pains don't keep waking me. How bad is the pain supposed to be before you take the hard stuff instead of Tylenol?  I guess this is all doable. It is nothing I can't handle so far but hope it gets better.

Hope everyone is having a good day. 

otter

Stickerlady, yes, yes, yes!  I had really terrible acid indigestion/reflux during the first 10 days of my first TC cycle.  Pepcid AC did nothing (or, maybe it did--I hate to think how bad I would have felt if I'd taken nothing but Rolaids).

The problem gradually disappeared after around day 10.  I asked my onco if I could try something stronger next time, and she offered a script for Protonix.  My insurance coverage likes us to try weaker stuff first, so I said I would try the over-the-counter, generic version of Prilosec (= omeprazole).  My onco said the OTC dosage is 20 mg per day; and she suggested that I try taking 2 of the OTC tablets (40 mg) per day instead of just one.  She said 40 mg is a really common prescription dosage for the same drug.

Two OTC tablets of omeprazole (= 40 mg) each morning before breakfast was just about what I needed.  I did get some "breakthrough" indigestion (mostly just discomfort and burping) during round #3 and #4, but I was able to stomp that down with a couple of fruit-flavored Tums, which are actually pretty tasty. So, go for something stronger than Pepcid.  Ask your onco about it.  There is no need to feel miserable during chemo--this is not an initiation rite!

As for the bone aches, I had them bad during round #1 and only moderate during round #3, but they were minimal during #2 and #4.  I have no idea why there was that difference, but I suspect it had something to do with where my wbc's were during those rounds.  I also don't know whether the bone/muscle pain was due to the Neulasta shots or the Taxotere; my onco considered both of them a possibility.  She was quite clear with me that the immediate SE's of Taxotere/Cytoxan could be pretty brutal--the bone and muscle pain, especially.  She told me to take ibuprofen (Advil) as a first choice--she never restricted me to Tylenol, except after day 8 or so when an NSAID might mask a fever they would want to know about.  She and my onco nurse both said to switch to Percocet if Advil didn't relieve the pain.  I never needed the narcotic--the Advil, plus getting off my butt and moving around more, seemed to work pretty well.  There were 1 or 2 days during the 1st and 3rd cycles when all I did was sleep or curl up on my recliner, though, no matter what meds I was taking.  The bone/muscle pain was very odd--it would keep me awake (shooting, stabbing pains), but once I fell asleep, it seemed to disappear.

otter 

Jay-Jay

KKing...thanks for starting this.

Familyroks...thanks for the very helpful lists.

Had my first A/C chemo Tuesday.  Yesterday slept away the day and today wanting to toss my cookies.  Please tell me it gets better soon. 

hunkydory

Hope everyone who has started txs are feeling well.  I have been following up on ya all and seems everything so far is "do able" as they say.  I start next week and the thought of it has me thinking of taking some imodium on spot right now.  I  hear the neighborhood icecream truck combing the area I live in as i type, and its playing christmas music out the loudspeaker for heavens sake.  What the crap is that all about.  Is god giving me a last chance at the xmas holiday. I am not on any medication either.  Well, just wanted to post since it has been a while.  Here's wishing all of you as pleasant of a weekend as possible.  HunkyD

otter

Jay-Jay, hit your onco up for some better anti-nausea meds.  You should be taking something even before you get queasy.  There is no prize for being tough, and no benefit to getting sick.  What did they prescribe for you?

There are lots of good anti-nausea drugs out there these days.  Some are designed specifically to combat the nausea and vomiting caused by chemo, like Emend (aprepitant), Zofran (ondansetron), Aloxi (palonosetron), Kytril (granisetron), etc.  There are also other anti-nausea drugs an onco should give you for "breakthrough nausea" or delayed nausea, in case the stronger drugs do not work all the time.  Some women need more anti-nausea medication than others. It's a personal thing.

Call your onco.  Don't let yourself be miserable.  AC is a big-time chemo combo that oncos know is highly likely to cause nausea and vomiting.

otter 

Alaskafurrycat

Jay Jay, Otter is right (and knows loads more than me I'm a newbie), I've just been to my onco's today and have  1st AC tomorrow they add some antinausea drugs to the iv and the onco's assistant said they last 2 to 3 days then if you start to feel sick take meds he's given me a scrip for 2 ...zofran and something else?..one takes 10 mins to kick in the other about an hour..

please ask ... my onco hadn't given me my scrip but the assistent checked!!! he stressed if you feel sick phone 'till they get it right

There should be no need to feel worse than you have too

hugs afc

liz19

hey ladies,

i had my port put in yesterday and my first chemo tx todno naay, i was

ok ,until earlier tonight i must have ate too much, cause when i took

my anti -nausea meds i vomit up everything that i ate, i called the

dr. office after hour # and she told me to take the other med. that i had and that came up too,so far no nausea and i am going to try and

get some rest for tonight, keep me in all of your prayers i am really

scared  and home that it will subside soon,thinks for listening to me!

                                                                        take care liz19

SanDeeLou

liz19

here's hoping you feel much better through the night and tomorrow.  i'll be holding a cool cloth on your forehead.

then maybe tomorrow you'll feel like giving the doc a call and say "NO WHAT CAN I tAKE". 

''{{{{

hugs andPrayers}}}}"

GramE

I had the chemo orientation and tour last night and it was an excellent presentation. One other patient was there - a man and between the 2 of us, we asked a zillion questions. The leader was very organized and gave us a binder with all kinds of print outs and phone numbers and map.



The tour included the location of snacks and drinks and they have an ice chip dispenser. Not the square cubes, but like small pieces of gravel. There are 13 recliners and all I could think of was, is 13 a lucky or unlucky #.



I was warned that the waiting for them to mix the meds can take longer than the infusion process. The pharmacy is a bitsy closet-like room and they do a 5 person double check to make sure the combo is correct and that it goes to the right person. Very impressive, but obviously time consuming.



There are lockers for your belongings, with real locks and keys, and nice big windows -not a stark, naked room. If you are there before noon, you get a free bag lunch also. The fridge is loaded with pudding and jello and fruit juices -- all free - and diet ginger ale. 2 visitors are allowed with each person and a tv set for each recliner, but the nurses get to choose the station/program.... An ipod is recommended or ear plugs to help with the noise. I am going to take an eye mask/blindfold in case I should decide to dose off. They also suggested a small blanket or sweater, even though they have blankets.



I think the thing that most impressed me was the lack of "smells". My experience with hospitals is there are usually strange smells or maybe it is just me.



There are a couple of website that have patterns to make your own hats and head coverings. Google chemo head covering patterns. I am not a very good sewer or knitter, but those of you who do knit or crochet might think of doing that while having your tx.



Just a note about tax deductions for medical expenses - it has to be more then seven and half percent of your adjusted gross income, according to my tax expert - to make it worthwhile to itemize. Last year I have nearly $ 8000 out of pocket expenses - which included the insurance premiums -- so keep VERY good records of ALL costs, including mileage, even to the pharmacy. Dentist and eye doctors count as medical expense also. May I suggest a spread sheet on the computer for keeping track...



Oh -- IF you are diabetic, they suggested taking your OWN glucose monitor, since they may not have one in the infusion area. Good luck and Keep Smiling: lefty/Nancy

GramE

With regards to acid reflux: the explanation given to me -- chemo destroys cells that reproduce rapidly, like hair, nails and the entire mouth to anus "corridor". In other words - the mouth, throat, stomach and bowels will also get zapped by the chemo drugs. I was told NOT to take any Tums, Rolaids, etc, as the calcium can counter act the other meds. I was never a fan of yogurt, but Lemon flavor is not all that bad. The Activia liquid drink has all sorts of good things in it, and although a bit strong tasting, it is only a very small amount to drink. Perhaps check with your doctor on the yogurt thing.



And for those "older" ladies (over age 60) out there: Aleve can cause internal bleeding and one can end up in a serious crisis situation. IF any rectal bleeding is noted, phone doctor immediately. When you have blood work done, the doctor can check for liver since Tylenol can cause trouble that way.



Geeze, what else is a no no? hee hee !!! Eating many small meals a day was suggested. Even one or two bites every so often. LIke what am I talking about -- I have not had my first tx yet and here I am offering advise. But I am a worry wart and prefer to have all the gory details beforehand.



Also, even though you may be vomiting and have diarhea, drink, drink, drink lots of water. sip slowly, as each time you "evacuate", you are losing fluid. Even each time you pee, drink, drink, drink. I asked about coffee and tea, as it can dehydrate, but my doctor said ANY liquid, except alcohol, is good.



Good luck ((((((((((( Junnies ))))))))))))).



lefty/Nancy (in DC area)

KKing

Welcome Jay Jay.. hope you are feeling better.

Sounds like you had an informative night Nancy.  You have some good infor there.

Liz19, I had a similar experience as you.. the onc nurse said to settle down the stomach just eat some ice chips.. I guess the cold does it.  Try and eat a tiny bit and take the meds.   Once the meds kick in you will feel so much better.

I have a question for anyone that may know.   Since our w/b are down... has any asked about bug bites happening.  Is there any chance that it can affect you.   I know here they sometimes carry West Nile but I wasn't thinking that.  I was thinking just the fact they are biting you.   Any thoughts??

Hoping you all have a s/e free weekend

Karen

Jo-Anne

Good morning everyone, I had my first consult with my medical oncologist yesterday. She spent 2.5 hours with us, and the Oncology Nurse Practioner spent at least another 1 hour with us. Exhausting to say the least, very educational, so much information to digest. I think I counted six prescriptions to be taken at certain times during the chemo cycle. My ingredients will be the TAC regimen. Today I am to have an Echocardiogram. Next Thursday I'll have a port inserted in my R upper arm. On Wednesday June 25th I'll have my first infusion. Is anyone else doing the TAC regimen? and what has been your experience.

It's so nice to be able to check in to see how everyone else is doing, and to know there is support out there.

Thank you and I hope today is wonderful for you.

Jo-Anne

otter

Ah, bug bites.  Here in Alabama, they're standard summer entertainment.

So far, I've had half a dozen chiggar bites, a mosquito bite, and a really nasty bite from a deerfly.  Despite the chemo drugs, the bites have made the usual small, itchy bumps, except for the deerfly bite which is bigger and itches more.

I'm not so worried about infections from the bites, since the skin isn't open and I nearly always put Neosporin on anything anyway.  WNV is a problem, but a low neutrophil count won't interfere with the ability to react to WNV since it's a virus (not bacteria).

I think if we're just diligent about skin care, we'll be OK.  If you know you've been bitten, wash the site with antibacterial soap (Dial etc.) and keep it clean.  Maybe put on a dab of Neosporin ointment.  I don't think a bug bite would be any worse than any other break in the skin.

Things are different on the surgery/SNB/ALND side of our bodies, of course.  Any time there is anything that triggers inflammation in that arm--be it a bug bite or poison ivy or a scratch or an injection of vaccine--the "normal" immune/inflammatory response can result in accumulation of lymphatic fluid in that arm, which can lead to lymphedema.  That's probably what I'm most concerned about.

otter 

mominaz

Jo-Anne...I had my first TAC tx on May 30th(a Friday) so I am now 15 days out. On Sat., I was still up from the steroids but could tell I was tried on the inside. By Sunday afternoon I could barely stay awake. I slept a lot and tried to eat so that I did not get nauseas. I did have a real problem with constipation from the steroids but I think I will be able to control that better next time. The woman next to me had TAC also, but she had diarrhea. Everyone is different. Just let your body tell you what is right. If it's sleep, then sleep. If it's more meds, then listen. I tried to work on Monday and that lasted for about 2 hours. I did not have a port so I can't help you with that, but there are a lot of wonderful ladies here that can tell you all about it. My 2nd tx is the 20th and I hope it goes as "smooth" as the first. Please check out the threads that talk about what to buy before your first tx. I will bump the best one up if it needs to be bumped. Being prepared is a great relief for a lot of us.  Everyone here is great and full of helpful info.

I had heartburn before all this and was told to take my Nexium everyday because it could get worse after starting tx. I forgot one day and really paid for it. Since I have taken it everyday and it's been a lot better. Good luck ladies!!!!

mominaz

It's called more tips for getting through chemo....something like that. Yeah chemo brain is real in case you were wondering!!!

KKing

Thanks otter, that was good information.   I was being a bit paranoid.     I take it you use bug spray to keep them off??   or does that bother the skin??  

Karen

Bonnie02

Otter,

I had my meds changed from AC to TC because my heart scan was not up to par. I am hoping that the TC is not as bad as the AC but from what I have read I am not sure.  Only had 1 AC before they discovered the heart problem.  I have always been so healthy I guess they figured it was ok to start the AC before the results of test. I will have to ask and see if I still get 3 more TC as was to be with the AC, should be I would think.  Take care everyone

Bonnie

otter

Karen, my skin is so darn messed up from this Taxotere that I am hesitant to put anything on it.  Right now, for instance, I have little red spots on my hands and arms.  If I wasn't on day 10 of this TC cycle, I'd assume I have measles or something.  Instead, I just assume it's the Taxotere, since the very same thing happened at this same time last cycle, and it went away a few days later. Oh, and I feel fine otherwise, so it's not likely to be anything infectious.

I just have very "delicate" skin that gets insulted by even the most expensive body rinses and lotions, much less the toxins we've been getting.  Taxotere is notorious for causing skin and nail problems.  That's true of the taxanes in general, I think (Taxotere & Taxol).  So, I don't use bug spray right now.  It's ironic, but the bug density here in the SE U.S. is way less than what it is in the upper-midwest (and probably Canada) in the summer.  The bugs here have a much longer season and aren't so frantic.

I should mention that I've entirely ignored the possibility that biting insects can carry nasty infectious diseases, which they can (besides WNV).  I just figure I have enough other things to worry about...   OTOH, right now I wouldn't set foot in an area where Lyme Disease was endemic.  No way.

otter

[Oh, and Bonnie, don't believe everything you read!  (otter winking...)] 

hunkydory

Jo-Anne and mominaz, i am starting the same treatment on June 19 as you are.   I hope you both do well with all your txs.  I have 6 of TAC three weeks apart and then some radiation.  Gonna be a long haul.  I had mastectomy May 15 and a port put in a couple weeks ago.  Keep posting..great site.  If I didnt have this site I don't know what I would do. 

BBLady

Hi

Just checking in to say "I survived"!.  I had my first TC yesterday and am doing really well so far.  I'm just hoping and praying it lasts.  I couldn't believe it but I got my period this morning!  I thought chemo was supposed to put you into menopause, not get you out of it.  I haven't had one since March1.  That really bummed me out, but if that's the worst that I have, I certainly can survive.  The benadryl that they gave with the IV has really let me sleep.  I napped yesterday afternoon after my treatment, at home before bed, slept all night and have had two naps today and am ready for another.  I guess I'm not having the typical reaction to the decadron.

I forgot to ask my onco if I should continue taking my nexium, but I took it anyway and sounds like that was a real good thing.  I've had a few hiccups and burps along the way, but not too bad.

Hope everyone has a wonderful restful week-end!

Alaskafurrycat

Hi otter and Karen [and anyone else:0)]

If you can get it the 'buzz off' clothes seem to really work well, I get eaten here at the best of times and so far that's been the best at keeping them away... it's great for the kids, they do hats, bandanas, shirts, socks ...you name it. It's pricey but cheaper on ebay and sierra trading post [a mail order company ...just google it] also if your broke just  buy the bandana you can cut it into strips and tie it loosely around you wrist [I'm scared of lym too...] hope it works for you too. I don't like to spray the kids and I come up in a rash if I get sprayed but sofar [touch wood] it's working well in the land of flippin' huge mozzies

afc

btw anyone know how long the zofran in the iv works for? should I take a tablet after 8 hours just in case ? [I know I'm a wuss but I so hate feeling sick... first AC today Friday the 13th someone has a sense of humor....]

GramE

About bugs, I am not sure, but if you loop a fabric softener sheet (new) through your belt loop or tie it on your shoes (track or tennis shoes) - when you tie the laces, it will keep yellow jackets away. Some golfers hang them on their golf bags and postal carriers tie them on their bags.



Mosquitoes always LOVE me, so I need to ask about bites.

KKing

Otter, weird enough..  I am having a problem with my skin on the side of my face.  Large red blemishes and dry patches all of a sudden.  I think I need more fluid.. wasn't drinking as much the last two days.   You know,  I am not keen on the bug spray at the best of times so I will ask the onc when I see him.  AFC,  that could be a good option.... and yes, I would take the medication..no harm.

BBlady... good to hear you are doing so well.

have a good one everyone

Karen

mominaz

I am breaking out on my back like crazy. It's from the top of my shoulders to the middle. It's so weird.

So we went out of town last weekend and I swatted a few mosquitoes that landed on me and all I could think was "You have no idea what your about to get yourself into guys! This is not you average blood bank" Heehee. Yes then I imagined mutant mosquitoes flying around Sedona. 

hunkydory- good luck. I can't go on enough about how great this site is for all of us. 

Have a great day ladies! 

Anonymous

Hi All,

I am starting chemo on Monday, June 16. After much to-ing and fro-ing with my onc (and on the TCH thread of this site), I have chosen to do TCH (6 x 3 weeks) instead of AC/TH, which my onc recommended. My onc felt that women are more knocked out by TC than AC. I didn't want the risks of AC/TH.

I've been reading how you are all are faring and I'll be curious to compare notes as this all proceeds.

-- Jo 

LibraGirl

Hi all,

I am 9 days out from my first AC tx and I am feeling really good right now - taste buds are back to normal and stomach is strong :-)  

I also had some bad heartburn days 5-7 and have now got a scrip for a stronger antacid (forget the name, will post once I pick up).  

Re: skin problems - the last 3-4 days I've developed really painful acne on my forehead, scalp, behind my ears and on my chest.  I am told this is not a side effect of the tx, but of the steroid.  Another bc patient I know had the same problem and recommended I use Dove face or body wash for sensitive skin.  I've used it for just over 24 hours and it is working miracles.   The inflammation and whiteheads are disappearing and the pimples are drying up.  My friend said that she used the Dove all through tx and never had a problem after the first time.  Try it!

GramE

Constipation: I recall when I had bad hemorhoids after childbirth, the nurse told me to get a small bench, like a kiddie one, or use two large phone books. When on the pot, put feet on it to raise knees up and then lean forward and less "strain" to remove the "offending" item...



As far as sensitive skin -- watch for moisturizers, my skin is ultra sensitive ( even allergic to adhesive tape) and I have not used soap on my face in over 30 years. I use Merle Norman products and they are not easy to come buy - in fact, I do mail order. Dove is good, as is Oil of Olay soap. Try to get unscented Dove. The moisturizers can clog pores, even though you may know your skin is dry. Oil of Olay unscented is quite good. It is silky and no greasy residue. Any product with alcohol will dry the skin even more. Sort of a dang if you do, and double dang if you dont moisturize.



AND, do NOT use fabric softener or dryer sheets. The residue can cause skin outbreaks. White vinegar, half a cup in rinse water will make clothes non static, if you are concerned. I have this advise from my dermatologist, and thought I might save someone the cost of an appointment with one.



Another tip for constipation, diahrhea: use your blow dryer after shower or after "evacuation" and/or on other sensitive skin areas. Towel rubbing can irritate.



Good luck ((((( everyone ))))))).

Jo-Anne

Mominaz - thanks for the tips - I have a list of medications with a specific regimen to follow - I'm going to put them on a spread sheet - I think it'll make it easier for me to follow - I printed out the list compiled by others who have pioneered for us - Good wishes on #2 on the 20th - I see we have 'hunkydory' starting on the 19th - I'm sure we'll get through this with each other - I too have chemo brain and mine started the day I was told I had a malignancy

Hunkydory - I'll put you in my prayers - the day you start your chemo, I'll be having my port inserted ( I opted for my arm rather than the chest) my BF (a 5 year survivor) had hers in her chest, she was bruised the entire 15 weeks and had a lot of pain with it -

Otter - I'm originally from MA where the state bird is the mosquito!

 Thank you for your care tips on bug bites the neosporin is a wonderful additive to insure the site does not become infected.

Hi Karen good to hear from you

Bonnie - I'm glad they discovered the problem! Adriamycin does indeed have the 'potential' to harm the heart muscle - call your doc with the question of the timing of the TC

BBLady - let your doc know about the onset of your period (since your last was in March) could be something the stress of this caused it, but could be something else - this chemo thing sure is scary

Alaskafurrycat - If you have the tablets, I would suggest you take them as recommended by you doc - everyone is different - you want to keep ahead of any signs/symptoms before it gets to be a problem - if the onco says to take take - Friday the 13th and you're okay? - you are indeed a brave brave soul!

Hi Lefty - mosquitos like me too - the feeling however is not mutual! BTW great tips

Hi KKing - water intake is really important everything I've been reading stresses getting it all in - my BF was so ill on her chemo she was taking one ounce of H2O q 15 minutes - she would set her timer and had one of those medicine cups which hold one ounce and she would get her water in - it did help - good luck with it.

Hello Jo - Good luck on Monday the 16th and check back in with us to let us know how you are doing - you too are in my prayers

LibraGirl - thanks for the Dove tip - I'm getting some before I start chemo - one corner of my kitchen looks like a stock pile already!

All of you keep up the good work I think if we think positively we'll all get through this and beat this beastie cancer right out of us. You are on my prayer list - I've had to do the prayer thing in shifts the list is getting longer and longer -

Will check back in later.

Jo-Anne

Stickerlady

I started TC on Monday and this is how my first  week went:

Day 1-n They had to stick me 4 times to get a vain. The Chemo going in did not bother me at all. Had the hick-ups at least 30 times. VERY tired. 

Day 2- Had hick-ups and start of acid reflux Very tired.

Day 3- VERY BAD acid reflux was told I could take Pepcid Complete 3xa day

Day 4- Aches and tired. Flight home to Valdez was only 40 mins but it seemed like 4 hours.

Day 5- Bone Pain, felt like the worst flu of my life, I took Vicodin after tylenol or Avil didn't work. I stayed in bed all day. I cryed I hurt so bad.

Today- what a difference, I am alittle achey but have my energy back. I cleaned the kitchen. 

I hope I don't get anymore SE. I have to fly to Anchorage on Monday to get bloodwork done and see my Surgeon. I hope I already had my bad day. 

I am so much more relaxed now that I know this is doable. It is the unknown that was the worst.

Hope everyone is having a good day.