January 2012 chemo

Lumpynme

CharB22 -ginger gum, eh? will look at my walgreens-thx!

ely136839

Well yesterday was my first treatment and that seemed to go pretty well, despite being there for 4.5 hours. 3 hours were actually in the fusion room, but I had to wait almost an hour for an insurance per-cert before they could give me the anti nausea meds before they could start. The actual treatment was uneventful. Just sat there with DH playing some word games since they did not have wireless Internet. We both brought things to do on computer, but had to resort to my book of games. We had fun though.



I was the youngest one there at 44 and it seemed as though everyone kept to themselves. My treatment center is the open kind with the nurses station in the middle. There were tvs on all three sides, but ours was on the CW channel with court cases and it was turned up very loud for this one lady. I might try a different spot if she is there again. I did ask about assigned seats and they told me some people do like to,have the same seat, but she did not tell me which ones, and just to go to any vacant chair. They did offer coffe and maybe juice and water along with blankets, but I came prepared with my own blanket, drinks, and snacks. Not sure how often the blankets are washed and would just prefer my own if needed.



Got home around 3:30 after quickly going through SAMs club. Had dinner by 4:30 and was starting to have a headache and feel a little nausea and very tired. Took tylenol and fell asleep from 6-8:30. Woke up still with headache and a little more nausea-by 9:30 I took Ativan and did not feel any different from taking it. Fell asleep,by 11. I woke up at 6 still with a headache and slight nausea. Tried going back to sleep and was able to get up and have some breakfast by 8:30. I'm hoping this day gets better. I have an appointment to see BS just for a follow up and then Neulasta shot after. I didn't think the nausea and tiredness were supposed to start that quickly-ugh! Hopefully that will be the extent of the SE for now, but I'm thinking that is not the case lol. Have a great day everyone!

ely136839

Lumpy me--I used to stir the bubbles out of soda for my kids when they were younger. I believe one of their doctors or nurses mentioned this. It did work so maybe you can give it a try.

kblack

Hi Everyone,

I am so glad I found this group.  I had BMX with immediate reconstruction on Dec 14.  I also start chemo tomorrow - 4 rounds of A/C every other week, then 4 rounds of Taxol every week and a year of Herceptin.  I had the port put in last Friday.  It didn't work after he did it initially so he had to go back in and redo it.  Its been very sore since then. 

I scheduled my chemo for Thursdays as someone had advised me that day 2 after chemo was worse than day 1, so I am hopeful that I can go to work on Friday, but am now feeling like maybe I've been in a bit of denial about how hard this will hit me.  I've also got 20 month old twin daughters and am praying that I will find strength somewhere to continue as much of our normal routine as possible.

Thanks to all of you who have already started and have been posting your updates.  So helpful!!!!   And good luck to everyone starting tomorrow or later!

Thanks, Kim

NCbeachgal

Ely- your experience after first treatment sounded much like mine. I didn't notice television in my infusion room though. It was pretty quiet in there. I'm pretty sure there is wireless Internet access but were having challenges connecting so we resorted to our 3G smart phones to play Word with friends through our iPhone apps and/or Facebook. Next time, I may take my Verizon wi-fi hotspot device for perhaps better download speed. I sound like a technology geek, but I'm not really.

I too felt like the youngest (45) person in the room. However, there was a young woman in a chair across the way that looked young. She looked very settled in like she was there for a longer treatment. There were also a few gentlemen with full heads of hair. They were in and out in a matter of minutes. Wonder what they were getting?

I too am surprised at how quickly the side effects came on and how difficult it seems to get on top of them, even with drugs. I had to take a Xanax at 3 am so I could get back to sleep. It worked thank goodness. Today is not bad, manageable but I'm feeling like blah, sore and with a headache. I

dread the neulasta shot.

JoyceNYC

Hi - here's another member of the January club.  Age 54 with BMX 11-16-11 with DIEP reconstruction -- long delay in recovery due to drainage problems. Waiting was excruciating!  Started 6 cycles (eighteen weeks!) TC on 1-6-12 then when finished will need ovaries/Fallopian tubes taken out because BRCA1 positive -- and lucky me, of course, triple negative!

So far so good -- no side effects other than tired most of the time  - the neulasta shot wasn't terrible, and I'm just holding my breath.  I am single, childless and have no blood family (but great friends who have been all stars).  I've tried to read all the hints and stocked the house with what I MIGHT need -- even the wig is ordered.  I guess it's just now a waiting game to see what side effects will happen.

Laura5133388

Good luck Joyce!

CatWhispurrer

Just home from the hospital.  I had my port put in last Wednesday and supposed to start chemo this week.  I just wasn't feeling/breathing right on Monday so had an xray and was admitted.  My lung was nicked with port placement.   About 30% collapsed lung and had a tube inserted yesterday.  It was horrible done under light sedation/locals but felt like they were stabbing me.  I don't know when I'll start chemo now.....   I hope to have the tube out by Friday.  Don't have much energy to post.  Hope to catch up later when I'm stronger.

momof3boys

Oh Cat I'm so sorry! Saying prayers for you now. That just stinks!

rachelvk

Catwhispurrer - Oh no! You're the second person I've heard that happen to in the past few months. It's scary that can happen. Good luck on your recovery.

kblack and joyceNYC - Welcome to our group. Regarding SEs, everyone seems to react differently. I had heard that day 4 was the worst, but others do have problems as early as day 2 (often from the Neulasta shot). So far I've avoided the big SEs - though I did wind up in the ER with a low-grade fever. Ask you onc about giving you as many meds as possible as a precaution (Decadron right around your infusion, Emend for nausea, Zofran for nausea, Neulasta to keep your white blood count up, possibly something for heartburn). And just take them as directed - or as soon as you start having SEs. Good luck. And Joyce - I'm another brca+ (although I'm brca2) TN sister. Yes, it's disheartening, but there's a lot of good news coming out. At least we know and can be proactive. My ovaries, and probably the rest of the plumbing down there, is history once I've made it through chemo and had my exchange.

Ely - I hope your day improved. One down.... Good luck over the next few days.

Day 7 and I'm hanging in there. Made it through a rehearsal, and it looks like I'll be okay for our first show tomorrow. But I'm watching my temperature and all these tiny cracks in my fingertips - open ports for infection right when I'm hitting my low point in immunity, probably.

Also - I was the source for the olive oil. One tablespoon (or whatever you can handle) twice a day. I'm now a full month into treatment (my tx's are once every 3 weeks) and my taste is hanging in there, and I haven't had much trouble with dry mouth or sores. I've also been using the Biotene mouthwash.

Night all. 

PCBarbie66

Day 7 for me and made it through the bone pain that hit on day 4, worst part lasting 2 days...read that some were OK with Claritan...not me, mine was like having my impacted wisdom teeth pulled out again..hit arsenol of drugs..nothing worked, but could fall asleep finally...Onc. nurse sent overnite prescrip for Hydronorphone (generic for Dilaudid)...will use that next time.  My Naulasta shot was in the Arm Firday at 4:00pm..pain was, Top of Arms, neck, upper back shoulders and Jaw...what fun that was  

Tonight woke up to my tongue having cancorsores..used baking soda, salt & water rinse just now..found it posted as suggesions on boards..actually felt better...figured at this hour I have nothing to loose..also read about people using Biotene wash..any of you using this..no sores in mouth yet, just tongue...which has seemed a little fat for days, maybe that was my warning?  Have the dry mouth every morningm dry nose and sore throat alot..ice chips..nice...hooked up a vaporizor last night in bedroom...broke right away, trying replacement tonight.  

Still very tired...but sleep is fitful these days.  Also I have Ovarian cramping, anyone getting that? that hit on day 6 and again today/tonight...wonder how long that will last.  Been active, going to physical therapy (twice now) and have popped by family business today to make sure it still exists.

AnnStAug

Sorry to hear your port dilemma. Praying for u.

AnnStAug

What is the formula for the baking soda, salt and water please.

Day two over. Slept for 8 hours. No SE's yet. Should I expect them day 3, 4 or 5???

Hope everyone is as well as can be expected.

Jennt28

Update for me: Good meeting with the onc this morning. Agreed that rather than 3 x Taxol 3 weekly will have 12 x Taxol weekly (less adverse effects and better progression free survival stats). She wrote me a permission note to get massages that I can take to my usual place just in case they baulk at massaging someone getting chemo.



I gave her the printout/ recipe for Scream Cream (there's a thread on it here). She'd never heard of it and was a bit dubious - but has said she'll look into it...



Started chemo finally at 4pm. I had taken a whole cold bag of ice cubes and sucked on them the whole way through the epirubicin, 5-FU, and cyclophosphamide. Meant I didn't taste any of the nasty tastes :-)



Drank so much water today...



Felt fine on the way home. Ate a very small dinner and had a yoghurt cause my stomach was feeling funny. Now in bed and my entire enteric system is definitely acting up with random pains in stomach and intestines. My eyes are also feeling irritated and dry already :-(



I have Emend and Kytril to take in the morning and then again on Saturday. I have a whole bunch of Maxalon with no real instruction when to take them???? I had dex in the drip.



Anyone got a recommendation for the Maxalon? Should I take it now since my stomach is hurting or should I just take a Mylanta chew?



regards Jenn

DianeNMil

Gayle56 -  I am starting on Tuesday too and it is also my birthday ):  If they can get my herceptin approved today, I will start tomorrow but I doubt it.

Cat -  I didn't even know that could happen...how scary.  I hope they get you better quick!!!  Hugs!

I met with onc yesterday and wish I could just start today!!!!  I am sooooooo tired of waiting!!  Lets get this over with.

PCBarbie66

Cat - I am so sorry and hope you recover from that quickly.  That happened to my stepmother and she healed pretty fast.

 Rachelvk - Finger tip cracking was something the nubies would get during the first week on the job...the boys use lotion/Vaseline in socks when sleeping...I'm sure us women can come up with gloves.  I didn't get that SE yet...I did notice they prune really fast.  I lost all my Clausius during the surgary and have been wearing gloves, as my skin is very sensative now.

Gonna relax today, raining here...The Ovarie pain has been robbing my sleep the last 2 days, but there is No Nausea and I am hungry all they time, No Fevers. Bone pain a receeded, No Migraines..Have small headache I'm on top of of...everyones SE's are very different & we share common ones. glad I found this board, my husband jokes with me and wants to know who the girls are doing, or what do the girls suggest...like were all drinking tea and laughing about this   we will be later!

I guessed at the Baking soda salt & warm water... It was 1 am and I was hurting...mixed it up so it was clear..left it on the shelf to reuse..worked great, my tonuge is normal color though..If t changes color from normal to anything else...let your Nurse know..tongue colorings mean different things.

JoyceNYC

It's great to find this sisterhood -- although others try to understand, if you're not walking the road...

Catwhispurrer- Hang in there!  Sending you good thoughts & prayers!

 PCBarbie66-what combination do you use of baking soda, salt & water?  My tongue is white today -- no sores -- but I wonder if it would help.  Please let us know.  No other side effects so far except the general tiredness -- blood tests tomorrow.

Kitchenella

A slight bump in the road, reported by Peggy's husband.  Peg wasn't feeling right last night and at 1:00 a.m. took her temp.  It was elevated but not to the 38 degree trigger point.  However a half hour later it was at 38.75.  Given we have no transportation here we called an ambulance which quickly transferred her to the ER in Shaarey Zedek.  Suffice it to say she was given an antibiotic by iv and another shot to raise her white count, which had dropped.  She will stay in the hospital for a couple more days receiving treatment in a private room.

AnnTop

Hi, Ladies:

I'm joining you on Jan 19 -- I'll be getting TC x 4, on a three week schedule. Reading your tips and insights have been helpful, but of course I'm anxious about how I'll react to everything. I'm getting a very short haircut the day before my first treatment and I've ordered a wig and a hairpiece to go with hats. I'll try the olive oil treatment that rachelk recommends to protect my mouth and I hope to keep up my long walks in the neighborhood -- they really helped with my recovery from the BMX with TEs that I had on December 20. Best wishes and prayers to you all.

Kite

I wanna say Welcome to the new ladies! I hope everyone is feeling ok today. I had my port placement and first round of chemo. Been flushed really badly but other then that I am ok so far.

Is anyone getting the TCH treatment?

Katie

Momof2inME

Cat, I am so sorry for what you are going through. Hope you recover quickly and pain free. Sending healing thoughts your way!!

As for me I am day 4 and the nausea has been almost too much too bear. A little achy from the neulasta on Tuesday but mostly just extreme fatigue. I forced my self to walk to the mailbox yesterday and I was exhauseted. we are gettin 6-8" of snow today so hibernating is the plan.

PCBarbie66

JoyceNYC - I filled my Solo cup 1/4 full of warm water.  Poured a little less than 1/2 teaspoon of salt into my hand, then took about a half a plastic spoonfull and mixed it up good...tasted it and it tasted about right and not too cold or hot...sorry not much science.  remainder I left in the cup by sink and am using whenever it hurts too much, or I eat.  My Nurse called in a perscription for a mouth wash & swallow called Magic Mouth a combination of a bunch a stuff all in one and it will help with my throat driness/mouth, sore throat, tongue sores and the sores that are just starting on the inside of my lips... My tongue is normal color pink and a darker red coloring where the sored are.   White tongue could be Thrush and type of Yeast infection on your tongue..I am to call my doc if my tongue turns white, you might want to let them know.

I have the general tiredness, but my men. cycle was thrown off by the Chemo, arrived today after 2 nights of cramping..it's a little under a week early, I was told this could happen

JoyceNYC

PCBarbie66: Thanks so much -- I see the onc tomorrow so I'll get checked out then but will try your home-grown recipe today.  Hope you feel better -- it's amazing how thrown off the whole body can get!

seacretgardn

Hi ladies, I began tx in Dec but am following here as well. So sorry for those who are already having SEs.



CatWhispurrer healing thoughts and prayers for you.



I had the mouth burning and sores pretty bad after the first 2 AC. Used the mouthwash, the baking soda salt rinse and was also prescribed a liquid nystatin for thrush. My onc wouldn't prescribe diflucan.



I will search again but someone had mentioned using virgin coconut oil. Just a small amount 2x a day to swish in the mouth. I have been doing that and thank God this is the best my mouth has been. Still have the burning in my stomach and esophagus but it makes it easier to eat drink and talk.



I also used the mouthwash to paint onto the worst of the sores rather than numb my entire mouth.



I hope you heal quickly.



Laura

seacretgardn

The tip on the coconut oil is from Lory 48 on the Starting Chemo in November 2011 thread.



Thank you Lory!

CJRT

Kite- I learned there are 2 different TCH treatments. I am on one of them- Taxotere, Carbo, and Herceptin. I have had 4 cycles so far, so if you have any questions about this one, I'd be glad to try to answer!

Kite

CJRT-

That is what I am on. My stomach is cramping like crazy!!!

CJRT

Kite- I had a bad time with the stomach my first cycle with cramping mostly, but no stomach issues the following 3 cycles.  I took Emend the 1st 3 days, had Aloxi in my IV, and had Rx's for Zofran and Compazine PRN.  I hope yours passes quickly.  My worst fatigue/functioning days were 3 and 4 and by 7 I felt back to normal.  I found I did much better going into cycles VERY hydrated and loading up on protein. How many cycles are you doing?

Kite

What is Emend and Aloxi??

Kite

I'm taking anti nausea meds but my stomach is horrible. I bought some Pepto