March 2010 Chemo Start

Charley

JLLG -  I'm with you sister! I hate this too ... So much of this is so mental ...  

Hugs, Charley

barb_k

Hi ladies; Sorry some of you are having a rough time. I had my second TC Wed. I have been so weak since. I finally figured out it was my blood pressure dropping. I normally have high blood pressure. But it dropped to 112/54. Way to low for me. Wo now have to monitor my BP until I can get back on my meds. A little constipation, but not as bad as last time. The Hair is still hanging on most of my head but a real thin top and a bad receding hairline. Was going to shave it this week end but my brother came to visit and just did not have the energy to do it. I should have so we could take our bald pictures, as he shaves his all the time. I even had one of my customers offer to do it for me. Hope I feel up to going to PT tomorrow, as it really is helping.

barb

EZH

Been lurking around, reading all of the posts daily.  So glad that we are moving through this, most of us are at least half way there, thank G-d.  I'm 6 days out from treatment #3 and feeling so much better than a few days ago.  The chemo fog in combo w/decadron antsy crawling out of skin, unable to thing clear thoughts really makes me anxious and not happy.  And today, it lifts away and ahhhh, so much better now.  

Lessons learned thus far, please add to the list:

1. question the sanity of people who take steroids for non-medical reasons.

2. retail therapy  really can do wonders for the psyche.

3. don't take for granted what a wonder it is to have clear concise thoughts.  Until the ability is lessened, in this case by chemo/med fog, I never really appreciated how marvelous it is to think so clearly!

Would love to hear other "lessons learned", practical or spiritual or whatever is on your minds!

Love to all.....xoxo....we are doing a fine job at this difficult time-all of us! 

hereandnow

EZH, I completely agree with your points 1, 2, and 3.  I have currently suspended my studies (PhD) while I do the chemo thing. The inability to focus, and quite often to remember things worries me, but in weeks 2 and 3 I seem to come good, so am going to re-start my reading next week.

And, every time I have a shitty experience, I go and buy myself a treat. Retail therapy has been underappreciated by me up until now. I think I'm hooked

MNLinda

Barb, I had the drop in blood pressure after my first treatment too.  The treatment was Tuesday, felt REALLY lightheaded Saturday, thought I was going to faint all day Sunday.  Went to urgent care and my bloodpressure was 90/62.  My onc says it's the abrupt withdrawal from the Decadron that does it. Next treatment I tapered off the Decadron, and it was much better.

lorrhaw

Update 7 days after 2nd chemo - once again I did relatively well.  Only had to sleep during the day for a couple of hours when I returned home from the infusion.  I was a little more queasy the 2nd time around but never actually threw-up.  One thing that is concerning me is that starting around day 3 everytime I took my compazine pills they made me gag.   I can take my sleeping pills with no problem so it must specifically be the compazine. I am worried that if this symptom gets worse with each treatment I won't be able to take them and then I will be in real trouble since they are probably the only thing keeping me from throwing up.  I think I will ask the nurses if I could try another med to see if I have a better reaction.  Some other things make me gag like biotene mouthwash, the salf/baking soda mouth rinse,  and peanut butter crackers which I ate during my first infusion.  I am starting to wonder if the gag reflex is psychological since anything that I associate with chemo seems to trigger the gag reflex.  Has anybody else experienced anything similiar.

Otherwise I am doing welll and even went on a mini vacation to the beach in California this weekend which involved a 5 hour drive with me doing most of the driving.  Looking forward to the next 2 chemo free weeks before I go back in for round 3 on May 3rd.

Terry731

Hi All! I'm new to this forum. Started 1st chemo 3/31 and go for round 2 on Thursday. Frosty we are on similar meds - Taxotere + Carboplatin x 6 every 3 weeks; HER for 16 weeks during chemo + every 21 days for 1 year. + Rads for 6 weeks. It will be a busy year!

Virtually no side effects for chemo #1 but ready to see what #2 brings! These posts continue to prep me and I am thankful. Went for a pixie haircut 11 days ago to manage the expectations and am still hanging onto the hair. I am wondering if they gave me enough doseage b/c I am feeling pretty good and that shouldn't be? I have a sore throat and a cold and many restless nights but thats it!  My port on the other hand has been problematic. It was implanted too deep and the nurse has to use a larger needle to connect with it, which has stressed me out. The numbing cream isnt cutting it. Any ideas besides a shot of tequila?

horsedoc

shot of Tequila... good idea.  Maybe they could do a local block (injection with a tiny needle) of lidocaine before sticking your port.  I might need to pre-med with anxiety meds next time; I don't have a port (only getting 4 tx) and it took 4 nurses 5 sticks to get an IV in my arm. It sucked.

I also had a sore throat most of the time after my first treatment. I'm day 3 post tx #2 and feel so much better than after my first treatment; I'm so glad!  I'm not really sure why, except I have been more careful about what I eat (basically just saltines and vegetables and fruit) and I did some exercise yesterday before I got too tired so maybe that helped.

EZH--I totally agree with your "lessons learned."  I have nothing profound to add.

staceyt

horsedoc,

I had the same problem (very small veins) so that is why they put in a picc line instead of a port - less invasive - you might want to ask about it - Stacey

staceyt

Hello Ladies,

Been away for a few days, had 3rd cocktail (13th) and the SE's were quick and hard this time around, I don't even remember Friday.  6 days out and still light headed, queasy, and these darn sweats, are killing me.  They cured my elephant legs with water pills and you ladies are right it is a side effect from the Taxotere.  I have only 1 more to go with the chemo and then we see what's next.  Tell ya girls, I had a good cry Saturday and I actually felt better.  I picked up a book called, Thers's No Place Like Hope, A Guide To Beating Cancer in Mind Size Bites, Author Vickie Girard.  It's quite good if you get a chance pick one up. 

My best to all my Sister Marchers - may your SE be none and your mind know it's temporary.

Hugs - Stacey

horsedoc

thanks Stacey, I will ask about the picc line!

Charley

Terry - The nurses where I go have used a little prep injection of lidocaine to numb my port area although last time they told me that repeated injections of lidocaine may cause my skin to scar or discolor or something.  They gave me the option for the spray instead which I think worked just as well ... still had a needle prick but was fine pretty quickly.  You should ask them if they have any other numbing agents they can use. 

Terry731

horsedoc/Charley, thanks for the advice. A shot or a spray of lidocaine were not even suggested so I will call tomorrow and ask. Hopefully I'll be ready for it this time around!  4 nurses poking around 5 times is unimaginable!

Joj129

Thank you all for your answers on allergies and head caps. I am so happy I found you all! I had a slight temp on Sat., nothing to worry about and did absolutely nothing yesterday. My energy has been 25%! Today is my 35th wedding anniversary and actually felt well enough to go out to dinner. Love you all. Jo

marilyn7

Horsedoc: Hang in there. I'm 14 days after 2nd treatment and feel great (except for the arm).  The grunginess subsided much quicker after the 2nd treatment and I feel a bit stronger this time around.  But my emotional health is much better after the 2nd treatment.

LillyC

Joj129 - Congratulations on the 35th anniversary!  That is great and it is wonderful that you felt well enough to go out and celebrate!

Terry731- My onc prescribed a tube of lidocaine.  I put enough on my port (with a q-tip so that I won't have a numb finger!) that it is white and then cover it with plastic wrap so that it won't come off on my clothes.  I do this one hour before access to the port..  It really helps! 

Thinking of you all with love and hope! 

fg2000

Hi Sandy,

I will be starting chemo soon AC 1 x every two weeks for 8 weeks, then I believe my onc said Taxol, again 1 x every other week for 8 weeks, then surgery including total node disection in right axilla, radiation and Aromatose inhibitor for 5 years. My tumor was last measured at 4 cm. I see your is/was 5 cm and I was just curious if you had surgery too or will be having surgery after chemo. My onc is hoping to shrink the tumor prior to surgery.

I am getting my port placed tomorrow. I am anxious to get started with treatment so that I can get all of this behind me.

I hope you are getting through your chemo treatments ok.

Kathie

Kayne

Hi Ladies,

It seems alot more trouble with SE for everyone this go round- sorry  to hear that and I hope you are all feeling better.  Well, they pushed back my chemo again, so I didn't go yesterday. My liver enzymes came down but not quite enough.  My onc talked with the gastroenterologist and decided to hold off on the liver biopsy!  That was good news.  The Avastin (experimental drug) that I could possibly be on  causes bleeding, so they did not want to cause a problem when there possibly is no problem.  You never think you want chemo, but I do.  I just want to keep moving forward, not holding steady.  The positive is that I feel great. 

Well, I got through the prom on Friday with my hair.  I washed dried it and sprayed it really good so it wouldn't fly all over.  Sat. was a different story, and Sunday I sported a bandanna to the grocery.  Still had hair so it looked ok.  Wore one to work yesterday just to keep it from falling everywhere and last night I took the plunge!!  My 2 girlfriends came over and Heidi shaved my head.  I had my kids there to lessen the effect on them.  We had a good time and played with it.  First I got a Mohawk. Then she cut my boys lacrosse numbers in my head and we took lots of pictures.  It wasn't so bad.  Then she shaved it with a razor to get it real close. My husband wanted to shave his head too, but I talked him out of it.  I have 2 wigs, one needs to get fitted so today I will be sporting Zoe to the lacrosse game.  I hope it goes ok. 

Joj129-- What about J&J's baby wash for your head?  That's what I was thinking of buying.  I don't know which cocktail you are on but the nurse told me cytoxin can give you allergy like symptoms.  I had a hoarse voice for 12 days after my treatment and a sore throat. 

Sandie- thanks for the tip on the sleep hat.  I ordered one.  It looks really soft.

Terry731 -- I use the lidocaine cream on my port.  Just like Lily, I put it on 1 hour before, cover it with saran wrap and then the nurse sprayed it as well .  I felt nothing, 

Heather-  I hope you are doing ok.  You went for number 2 yesterday, right?  Let us know. 

I hope everyone has a good day with minimal SE!!

Michelle

lorrhaw

I posted this question in the Chemotherapy thread yesterday and didn't get any response so I wanted to ask it here.  It seems like some of my SEs, specifically the gagging reflex, might be psychosamtic since already anything I associate with chemo makes me gag like my anti-nausea meds, the biotene mouthwash, the salt/baking soda rinse, the peanut butter crackers I ate during my first treatment etc.  I had read somwhere that some people experience nausea like symptoms for years after treatment ends when they are exposed to things that remind them of chemo.  Is anyone else experiencing anything similar and how are you dealing with it?  I have had only had 2 treatments so far and am worried that if this gets worse with each subsequent treatment that I will be a mess, especially if I can't take my anti-nausea meds without gagging,

llm822

Hi everyone -

I had my second round of AC last week and everything went really well.  I mentioned to my infusion nurse that I had been uncomfortable overnight after the first treatment, so she adjusted my medication schedule and it worked like a charm.  I've been a little nauseous but nothing to complain about, really.  But I've come to the conclusion that it's going to be week #2 that gets me every time, this foggy surreal state of mind.  I'm usually a very optimistic person, but yesterday everything just felt so wrong.  I know it'll pass, but while I'm in the fog, well, it's no fun...

BTW, I love my shaved head, even though I have a tan stripe from where my part was LOL

Yeshua4Me

Hi,

I've been "lurking" for about a month now. I've had 2 chemo sessions so far. My next is scheduled for May 3rd. I am on day 8 from my last chemo. I am given Adriamycin and Cytoxan. My head "cleared" yesterday and now I can think straight. I am 47, have 3 kids (b-27, g-23, b-19), and am married. I found a lump in my left breast last Dec. but kept quiet until after the Holidays. Saw Dr. the first of Jan. and was diagnosed with breast cancer soon after. Because my father died of pancreatic cancer 10 years ago, the Dr. wanted me to have the genetic test. It came back positive for BRCA 2. Had both breasts and ovaries removed on Feb.11. Had reconstruction at the same time. All my "fills" are completed (given only 1 week apart) and will have my exchange surgery one month after chemo ends. I will have 4 rounds of A/C three weeks apart and then Taxotere for 4 rounds, three weeks apart. Chemo ends for me on August 16th. My new breasts stand up so pretty! And I NEVER wear a bra!

The first chemo wasn't too bad with side effects. The usual nausea, bad taste, confusion (or out of body experience!), hot flashes, etc. The second chemo was a bit harder. Nausea more severe and lasted longer, gums bleeding, mild bone pain, CONFUSION (I hate that), etc.

Dr. started me on neupogen shots after second chemo. I take the shots in my stomach for 4 days. Have mild bone pain, nothing I can't handle.

Hair started falling out 16 days after first chemo. My scalp was so sore. Hurt to even lay on a pillow. Then, hair all over shower! Had the kids come over and my daughter cut it really short with scissors, my youngest son shaved it into a crew cut, and my oldest son took photos. I must admit, I was a bit shocked when I looked into the mirror and a single tear rolled down my cheek. Now, I'm used to it. Completely bald on the sides and rear of head but have a really cool mohawk growing down the middle of my scalp! I bought a wig. Hate it. Never wore it and not going to. I wear scarves. I go to the Middle East (my best friend lives in Israel) a lot and I wear scarves while there so I am used to them. I wear a beanie to bed because my head gets really cold. While at home, I go "commando!"

So, this is me. Glad to have found this forum. Many posts have made me laugh~others, cry but all have helped me face this disease. Thank you for sharing.

Lesinindy

Well it finally happened, my wife wants me to shave off the stubble that she has left. I really don't want to do it, but will. I'm finding out that cancer is a long series of "really don't want to do's" that you find you "have to do". She goes in for TCH on Thursday #3 of 6 (yipee half way done) and I might mention (after reading here) that she plan on a "light' day for Friday.

 Yeshua4me You are in good company here.These ladies are the best. My wife used to belly dance years ago and those scarfs she used then are really coming in handy now. 

lorrhaw

Hi Yeshua4me - welcome to the forum.  Sorry that you have to be here but now that you are you will find a lot of caring support and information,  I was diagnosed on January 8th of this year, very close to your diagnosis.  I too have had 2 rounds of chemo and saw from that your post that we both have our last chemo on August 16th.  We will have to have a party!  I did pretty well after both treatments, a tad queasy, a little spacey and felt the need to eat constantly.  The first 4-5 days are the hardest for me and by the start of the second week I am pretty much back to normal,

Keep us posted on how you are doing.

MNLinda

lorrhaw, I had lots of SE's, but no nausea or gagging, so I'm not sure I can be of much help.  But it sounds like something that might have its roots in anxiety.  We know that anxiety can have a lot of negative effects - just look at the way it can make your blood pressure rise, for example.  Also it's not unusual for people to have a lump-in-the-throat feeling when under stress, which could probably go hand in hand with difficulty swallowing.  Then it tends to feed on itself - the more you experience the symptom, the more anxious you become.

I've used self-hypnosis to help me get through surgeries - I found several books on the subject in the local library, one with a CD.  There is also a guided imagery site affiliated with Kaiser Permanente, Healthy Living to Go audio library, with some audio files in MP3 format.  If nothing else, these techniques get you to breathe deeply, and that seems to alleviate some physical symptoms in ways that we don't completely understand.  And it doesn't cost anything to try it.

Yeshua4Me

Lorrhaw- Days 4 and 5 are also my worst days. It really bothers me that I can't think straight during the first week after chemo. When speaking, I know the words I want to use but just can't say them. It is frustrating. Luckily I work from home so only my family has to deal with my confusion! But I can't work for at least 10/12 days afterwards because everything I write during that time doesn't make sense!

Yesterday noticed my tongue was cracked/split in a couple places. Hurts a bit when I eat. Sent my Dr. an email about it but he hasn't answered yet. Hope it isn't a big deal. Have to much to do to be focusing on a sore tongue!

lorrhaw

Thanks Linda and Yeshua4me - BTW my name is Lorraine which sounds a little friendlier than my logon name of LORRHAW.  Thanks for the information.  Linda you may be right and the gagging reflex comes from anxiety.  I am going to talk to the chemo nurses about it when I am in tomorrow for my 10 day blood test.  Lots of my friends have suggested that I try to meditate to help get through this but I have always been terrible at it since I can't get my brain to stop doing its thing and wandering all over the place but it might be worth a renewed try.

I have experienced the same mind issues that you mentioned Yeshua4me.  Before starting chemo I thought that chemo brain was a fallacy but I now know it is for real.  It is strange how sometimes normal everyday words don't come to mind anymore.  Have you tried the bakingsoda/salt water rinse to help with the sore mouth?  There is a receipe for it out on the chemotherapy tips forum along with lots of other helpful tips to get through chemo.

Thanks guys.  Talk to you soon

undecided8

So disappointed! I went to my Onc. today and didn't get ANY good news. I thought I was only going to have to do 4 rounds of Taxotere, turns out I have to do at least 8!!! I cannot imagine doing this 6 more times. Also, my shoulder/humerus that we had hoped SO badly would repair itself with radiation and chemo has not gotten better, in fact it's worse. So, he recommended I go back to the orthopedic oncologist for a follow up to see if he wants to go ahead and put pins in the shoulder. I've had some really good days in a row now I guess I shouldn't complain but why not huh????

Suzanne E. 

Charley

Went for my last TE fill today!  Woohoo!  So now it is just a waiting game.  Dr. says to come back 4 weeks after chemo is over to "talk" about exchange.   I'm glad to be done with one part of this mess. Progress.

Lorraine - I have been told that chemo interferes with your muscosa.  So basically of the lining of nose, mouth, throat, stomache, etc. So it could be psychological (I know when I get the "gaggy" feeling it is totally in my head) but could be physical as well. I would certainly mention it to the nurse or doctor.  

Suzanne - I would say you have every right to complain.  And VERY LOUDLY! They say to take it "one day at a time".  If you figure out how to trick your mind into that, let me know.  (I have 3 rounds of TC left and I cannot stop thinking about *3 more rounds*.)  I can't give any good advice but know that I am thinking and praying for you! (((Gentle Hugs)))

Charlene

horsedoc

Lorraine, some of your issue might be psychological aversions to those things, like you are thinking it might be.  I now have that issue with this wonderful vegetable soup that I have been eating; it's was the only thing I could eat after my first treatment.  I had some the 2 days after my last treatment (Friday) and now I can't stand to even look at it.  The thought of eating it makes me sick.  I'm like that about some cereal too.  Luckily nothing is making me gag like you are having trouble with.  I have noticed though (like others have mentioned) that since mucosa is affected I sometimes find myself almost choking when I eat or drink something.  Fun.

teemee

Sending hugs Suzanne -- the stamina this crap takes is unbelievable. I am thinking of you.

Hello to everyone else too, I've been lurking since tx#2 on 4/15, feeling just terrible. Today is the first day I can feel my skin, it was like I had an inch of rotten goo spread all over me and I couldn't reach the world.

More later when I'm less out of it

hugs, T