Starting Chemo October 2012

Sonson- between you and Marlene, I am getting my daily dose of laughs in! Also....I hated days 3-7 this last time. Praying this next cycle is less brutal.



Loubar-we're on the same chemo schedule. Same start date. Are you every 3 wks too?

I've been lurking here since I got my diagnosis in Aug. 2012, but finally decided to register because this community has already been so incredibly helpful to me.  So much great information.  E.g., that days 3-5 after chemo (AC) are the worst for alot of you - knowing that helps me realize I am not alone!  I've only had one cycle so don't know if that will be the pattern for the future. 

I live alone and although I have alot of support from family and friends, most of the time I feel like it's just me and my two dogs and the cat.  They are great snugglers but, like my family and friends, have no real experience with this.  I just want to say how much I value the words I read here from all of you!

Hi all - im new to this thread.

Had first round of AC yesterday - drank abount 2 litres of water beforehand and two litres during and at least another 3 afterwards.  Before I left the chemo ward I had peed out all the red stuff and have had none since - has anyone else had the colour clear so quick ( I thought it was over a couple of days). I was drinking copious amounts before infusion as I can only use one arm (due to node removal on right arm) and the veins have a tendency to collapse and/or give off an excruciating sickly feeking.  Not to keen on a port or PICC line either.

I posted on another thread re my treatment which is ACTH three weekly AC for 4 rounds to begin with - I had a hard time yesterday getting someone to explain to me why I am having this particular treatment but I eventually did (sort of). It differed to what I have read abount the chance of heart damage vs benefits of treatment but basically I have this treatment due to the aggresive nature of the cancer.

I had also been offered to take part in the Aphinity trial which I declined due to potential further SEs.  I only have the support of DH and DD due to my family acting like a complete bunch of self absorbed jerks about my diagnosis (one would like to think that at least one time they could think of others).

So far in the way of side effects are a headache after the infusion (like a hangover) and on/off taste changes, mild constipation, sudden onset tiredness (one minute im fine then Im all sleepy) and a tiny bit of head spin.  Nothing dramatic so far and Im hoping further side effects are just as manageable.

Just realizing that I missed reading some posts. 

jcolford, I thought I had done a lot the past couple of days but wow, the baking. Wish I lived nearby.

Welcome Shikari; AC for me too but #2 today. Similar S/E but diarrhea for me not constipation but this time my MO says use Imodium sooner and more as needed. I love my Bard Power Port. Honestly! It hurt for several days after implanted but now nothing at all and I love it for chemo and blood work too. Yesterday when the nurse accessed for bw, she left the IV kind of bit in so I did not even have to get it poked again today. I regretted that momentarily last night as two of our kids invited me to go swimming with them this AM and I could not as the butterfly in. Chemo nurse said I could have taken it out myself! 

loubar, your "bald" description made me smile. I guess I will do that sooner than later but the #2 was a good start. 

springwill... also a big hello and welcome to you too. I am glad you do have the dogs and cat even though alone. Have you noticed that they "empathize" with you? We have 2 cats and they spend a lot of time on my bed with me these days.

sonson, I love baths too and had not thought about the hair washing issue so thanks!

In bed but desamethasone is definitely in my system. Feeling OK so far.

Marian

Welcome to all the new posters! Sorry you need to be here but glad you've found this source of support. Feeling better after two days of GI irritation - not exactly diarrhea but definitely a 'speeded up' system, IYKWIM. Amazing how when I was feeling great at week 3 post first chemo I had completely forgotten how I'd feel again during week 1 of round 2.......Still, not nearly as bad as it could be and now I'm half done with my treatments!

There has been a lot posted in the last two days so I apologize in advance for not addressing everyone.

MarianElizabeth - hope your 2nd tx went well!

Shikari - I drank about 48 ounces of water during the treatment and only had color one time after being at home. Of course, drinking that much I had to do the lovely iv cart pull to the bathroom there several times as well. 

I had my 2nd tx yesterday.  It is never a good thing when you can see them teaching a new LPN how to insert the port on a person before you.  My port is not really seeable and is small. Even the tech who accessed it for the liver biopsy missed it........of course, so did this new LPN so the they had to wiggle it around and adjust it to get it where it was supposed to be.  Not so awful at the time, but boy, did that make it coming out PAINFUL! Of course, that was awful done by a float nurse that isn't normally there, so that could have had something to do with it. 

Met with the doctor before chemo, and I found out the results of the circulating cancer cells in the blood test.  That number is 0 -- woohoo! It eliminates a means of checking what the cancer is doing from the chemo, but I'll take it.  This whole time I've had visions of cancer cells doing conga lines in my blood stream. Everything else was good to go for chemo.

The actual chemo itself went fine, and I have to say that even with not loving the port access, I really am thankful to be at a facility where everyone is so nice and caring.  They really take time to reanswer questions, and chat with me while they are having to do the Adriamycin push.  They also keep a fridge stocked with some drinks and crackers (there might be more, but I've only had a drink from it).  I did learn from last time and ate during treatment.  It did help me to not get so nauseous so quickly.  Nausea is apparently going to be my not-fun friend every time, but I can live with that if it is as controlled as it was yesterday.  Of course, who know what new fun today may bring    I know we should still be drinking tons of water, but once I'm a bit nauseous, water is not my friend.  I can do ginger ale or coke, but water is a no go.  Would adding crystal light maybe help with that?  Anyone have any tricks for getting water into their system besides jello?

Mrs Cich-Cute pic of your daughter! Looks like they had a good time playing beauty parlor! Like I've said before, I can't imagine having little ones through this. Trying to reassure them and explain what's going on has to be so diffucult. It takes parenting to a whole new level.

Poke- I wonder if some of your hand numbness is taxotere effect?  I wonder if your taxotere substitute has the same side effects? I am having some neuropathy in my fingertips b/c of the taxotere....it's very annoying!  I need to let my MO know when I go for my herceptin today. I would definitely let your team know about the numbness.

I am also very worried about mets popping up later.  It really bothers me also that you look at life expectancy and recurrence rates in terms of 5 or 10 years. I have many more years that I want to do things!  I agree that seeing mets in women with stage I, or smaller tumors makes me more nervous since my tumor was 4 cm. If I didn't notice something that huge in an obvious part of my body....at what point am I going to find cells growing in my liver!? I don't say anything about mets to my husband because I don't want him to be nervous. I think he's blissfully unaware of my chances of recurrence. I had my BRCA testing yesterday. I have a low chance of being positive, but it worries me for my daughters. They shouldn't have to be faced with decisions on prophyllactic surgery so young....but I am grateful it's available so they can reduce their risk. My sister-in-law (my husbands sister) was dx'd w/BC at 40....she was BRCA neg....so this will hopefully clear my side of the family.  The genetic counselor did mention (not sure if any MO's have talked to you about this--mine hasn't), that they recommend your daughters to begin clinical exams and mammograms 10 years earlier than the youngest diagnosis in your family. So, my girls need to start at 30. I can accept going through all of this if it keeps my girls from having to suffer in their lifetime.

Well, time to get ready for my weekly date!  Also, I have an appt tomorrow, but I'm a month out from my port placement and although it does stick out....I am having a really annoying poking sensation in the corner of my incision site. I'm guessing it's a suture that maybe didn't dissolve, but it hurts to press on that area and even certain movements in my chest cause it to feel like something is snagging. Does anyone else have this sensation? Just thought I'd ask.

Have a good day ladies & I hope everyone has faired well with Sandy. After living in S. FL most of my life, I know storms like that are so devastating.  I was quite a bit north of Andrew when it hit, but I remember lying there listening to the roof lift and let down.  

Anyone doing anything fun for Halloween?  Anyone dressing as Mrs. Clean? LOL

I keep hearing other people like chicken soup as well.  And I can also add to it myself.  On days 3 thru 5 it's about the only thing I can tolerate is chicken soup.  I have to force myself to drink water.  I try to drink it really fast so I don't notice it so much on my tongue, but chicken soup and herbal tea is the only thing I can do.  After I get over days 3 thru 5 I start eating again, but it's slowly.  My taste buds feel like they've been burned.  I often wonder if things will ever taste good again.

I like the Mrs. Clean idea for Halloween!  Great idea alcb70!  I have my port on my arm instead of my chest and it still stings from time to time for no reason.  I also wonder why.  It's been two weeks since it's been put in place and it only stings when I move it in certain ways.  I know don't move it that way...but you'd think that you could move your arm any way you wanted once it healed! 

Noranelly-welcome-sorry you have to join our group, but welcome just the same.  If we can help in any way let us know.  The first round of chemo is always the scariest because you don't know what's going to happen.  For most of us the side effects don't creep up on you until day three and last until day five...then you slowly start to feel just a bit better each day after that.  But this may not be the same for you.  Once you get this first one down you should know what to expect for the others.

Marian-glad I could help with the idea of more baths!  I've really been enjoying them! 

Loubar-I can relate to the perfectly round head thing...plus my head is so small.  I used to have a massive amount of hair on my head so you really never knew how tiny my noggin was until we buzzed it all off.  It's a tiny thing...and actually all my hair never fell out.  I still have hair.  Of course we buzzed it all off and it's only like a quarter of an inch long and I swear the grey ones are growing faster and longer than the brown ones!  It's probably just my imagination about the grey hairs, but I'm not completely bald.  Makes me wonder if I had left my hair the way it was what it would look like???  Hmmm.  Too late now.

I will be going to the hospital this afternoon to do my pre-op for the port placement on Friday.  I promised my daughter I would call on my way back so my grandaughter can come by in her costume.  She is going to be Clue from Blues clues.  So is it necessary to do a general for the port placement?  My surgery is scheduled at 5:15 PM and I am afraid I will be so dehydrated they will have issues with the IV.  I had knee surgery this summer at 2:00 PM and the nurse blew 3 veins before finally putting the IV inside my arm at the elbow.  Just wondering how bad it is with a local????

6 hours before for me too and "conscious sedation". Actual surgery was about 20 minutes and I was in a chair right after and played a board game that evening. My surgery time started at 4:30 PM.

halfcan- my first chemo treatment I didn't eat ice chips and had the same problems with swollen gums and it made it hard to eat anything that was hard.  Plus everything seemed to get up there in my gums and then flossing them was a nightmare.  On my 2nd and 3rd chemo treatment I ate ice chips the entire time they were giving me the chemo drugs and I haven't had swollen gums either time.  I say this works or maybe it's just a fluke, but I'm going to keep doing it.  It's worth a try if you haven't tried it.

schoolmom- They gave me a light sedation for my port placement which meant they had to find a vein.  I told them when I got to the hospital that the reason I was getting a port was because they were not going to find a vein in me so they got their experts to come in and find one for me.  They got one first try and I was amazed.  Just let them know that they may have a problem and they can have their best come look at you.

Halfcan - my #2 is on friday - was the Nuepogen shots b/c low wbc? Also - why the port? my first was through the vein in my hand, if this worked well for #1, will this continue? I have pre-chemo appt. tomorrow for bloodwork etc. but wasn't sure about the port as it seems everyone has one and this wasn't mentioned to me.  I do hear you though re. the weakness / lightheadedness, that impacted me the first 4 days  which were horrible and the dry mouth, but then I picked up.  

nbnotes - what was the blood test you had? is this common?

Loubar- not to scare you, but chemo ruins your veins.  And they don't tell you this when you start...maybe it's an insurance thing I don't know.  But the first two treatments I had were in the vein and I did fine, but they were never able to use the same vein again.  It just disappeared on them until they had no more veins they could find.  Now they can't even find the vein in the middle of my arm and I've only got one good arm since I had lymph nodes taken out of the other arm.  If they had told me that it was going to ruin my viens I would have gotten the port from the beginning, but they never told me this.  And I never really had excellent veins to begin with they were just okay.  But I thought I'm only having six treatments so I should be able to do this without a port and then I had read things on the internet about others having nightmares with their ports and I didn't want the hassle so I thought I was doing the right thing, but in hindsight I would have done things differently if someone had told me that I would ruin my veins in my one good arm if I didn't get this port.  So I had to say something.  What you do with this information is now up to you.  I'm hoping that since I've only had two treatments that my veins will eventually come back...they haven't yet...but I'm hoping. 

Loubar, I've had 2 chemo infusions. First one was in a vein in my good arm. About a week after my first infusion I developed a small rash right around the IV site. Dr wasn't really concerned at first. At my appt 2 weeks later, when it hadn't gone away, she took a closer look and the chemo killed the skin around where the IV was. It now looks like a burn scar. At that appt she recommended I get a PICC line put in. I've had it for 2 weeks and its not a problem. I don't like not being able to not get my arm wet but other than that I'm good. I didn't want the port because she said she recommends you keep it in for 3 years since that's when you're most likely to get a recurrence. I didn't want that in me for that long and I didn't want anymore surgeries.

Schoolmom: I was under for my port. I was not given an option but was happy because I am uncomfortable with the thought of being awake for stuff. Especially since they were feeding it to my right from the left. Anyways, I had my surgery at 8:30 and it took 45 minutes and I was home around noon. The only reason I wasn't home much sooner was because the radiology team screwed up my xray to make sure everything was in place and it had to be redone. I probably could have gone home otherwise around 10:30.