Chemo June 2010

PearlGirl

My Mom is stable tonight. Her blood count was down to 6 so they gave her two units of blood. Now her blood sugar is up over 300 so have put her on insulin. Can't slow the diarrhea even though they think the Salmonella has passed through. She is down to 90 lbs. There is such a hodge-podge of stuff going on with her it's difficult to imagine what will happen next.

I appreciate your prayers and good wishes and apologize for not addressing each of your personal issues. You are all in my heart and prayers! I'm so sorry that it's such a challenging time for so many of us. With work, family, emotional and physical issues to contend with, it's truly amazing to me the amount of spirit everyone continues to show.  Thanks to you all for being here for me. 

JFV

Chey- So good to hear from you!  You are doing great!  I am praying for you.

Mimi-  I am really angry at your onco for not responding.  Please take good care of yourself this weekend!

Kitty-  I vote for diability too.  They are not gonna' leave you alone at work until you leave them.  Please be good to yourself!

Bon-  Glad to hear Mom is stable. 

I am having a very good couple of days.  Actually went to a family party and am still out of bed at 10:30 pm.

Blessings to all!

kittycat

Chey - I am on weekly Taxol and only see my onco every 3rd treatment, so yes it must be normal.  They take my blood and review it (make sure I'm okay for chemo).  The chemo nurses review the blood counts with me (they did last time, they forgot the week prior).  I hope drug #3 works for you! 

I told my husband I was tired and felt like I should have a glass of wine.  He said, "Why don't you have wine and one of those pills you take"  (Ativan)  LOL!!!  He was kidding.  I just had a glass of water and I'm laying on the sofa!  (wondering what the heck happened to the Cowboys). 

DesignerMom

Bon-  Your mom sounds like a fighter, must run in the family.  She and you remain in my prayers.

Cheyenna- You sound a bit better.  I'm so glad to hear from you.  You are going to do this girlfriend and someday you are going to be so proud of yourself!

JFV-  You party animal you!  ENJOY!

Kitty- You always crack me up.  It sounds like DH has quite a sense of humor too.  You always sound "up" even when I know you are beat up by chemo.  Such an inspiration.

ishobie

My red blood count is now only 9 and it should be 12. I asked her if adding iron and red meat (which I don't normally eat) would help and she said no, that this is only related to the chemo and what it does.  I am sooo tired.  I  am working part time during my treatments and I get home at 2 and sleep for 3 or 4 hours. I have 2 more treatments of TCH to go and then 9 months of herceptin. I get so very sick, gastro, from the TCH that this last treatment I was determined to stop my treatments at 4. I had a very small tumor, SNB was negative and no lymph nodes involved. My family has talked me out of not continuing since I have come this far. I just feel so crappy and DREAD my next treatment on the 3rd of September. My oncologist said if my RBC has dropped anymore I would need a transfusion first. Sometimes I can't believe what my life has come to NOT FUNNY, but I have to try to maintain a sense of humor or I would put my head under the covers.

workmother

ishobie - so sorry you feel so bad. I have been so tired lately too. Everyday, all day. Nothing seems to help. I was never told what my red blood count is when they check it before my treatment. Next one is Tuesday (dd Taxol). I'm going to ask.

Had a very teary evening last night. Just in a funk. Think it has to do with upcoming treatment. I only have 3 left but it feels like its still never ending. And the n the thought of starting rads after is overwhelming to me. And for some reason I've started to worry about recurrence. Never had those thoughts before. Maybe its time start up my Xanax again today.

Going to spend the day at the beach with my DH, my 16 yr old daughter who just got home from camp yesterday and my 13 yr old son. Hoping I can try to feel "normal" and enjoy this day. Not sure what to wear on the head. Not the wig. I guess a scarf. After the beach coming home to shower and eat. Then off to see the last performance of a show my son is in and going to the cast party. Long day, hope I make it!

Sherry9316

Chey - you sound much better.  Must be the new medicine or the combination.  At any rate, keep taking them regularly.  Some people when they start feeling better think they don't need to continue the medication.  Hopefully your med combinations will get you through till your tx is finished.

I  had a very rough day yesterday due to sickness.  Haven't been that bad in a while.  Am better today thank goodness but I think I'm getting a bladder infection.  Guess I'll ask about that tomorrow when I go get my Neupogen shot.  So looking forward to that - NOT!  Wednesday is my last Taxol tx, then a three-week break before starting FEC tx's.  Looking forward to the break but not the tx's.  My list of questions for my onc this Wednesday keeps growing.  Lord help me get through the rest of this year.

NorthernGirl

Bon:  I can't believe how much you have to deal with at this time. I hope you and mom are well on the road to better times.

Kaycee:  how did things go with the surgery?

Chey:  you sound better. I hope the meds work well for you

ISHOBIE:  I know what you mean:  hubby and I look at each other from time to time and say "what the hell"? what has our lives come to? I have bags of meds on the counter, I feel like a wreck and our entire lifestyle has been turned upside down. This is what happens when you hear those @#$# words:  You have cancer.... 

Now that I am on Gabapentin following my 2nd Docetaxel infusion (last Thursday), the side effects are bearable. Some pain in my hips and pelvis, and TOTAL fatigue and weakness, but otherwise... this is do-able.

My two oldest daughters leave for Greece today... our grad gift to the oldest who just finished her architecture degree. They will be gone for 2 weeks. I miss them already, but I am so excited for them. When they get back, the younger daughter goes straight back to university for 3rd year. They were a great help around the house... hmmm I may have to train my son on laundry duties...

My mom came to visit me yesterday... first time in 2 months. She just lives across town, maybe a 5 minute drive. Prior to that she was gone for 2 months visiting relatives while I was going through 2 surgeries. I made her a quick lunch and we shared some gossip. Might be nice if she showed up with a soup or a lasagna. I try to be positive, but my mom can make things tough. I shouldn't be surprised, this really is consistent behaviour for her. Thank goodness my hubby, kids, and friends are so supportive, cause some mums just don't know how to be there for you. If I spend any time thinking about it, it drives me crazy. Sorry for the rant.... grrrrr.

toni30

Hello Ladies:

Thanks for suggestions on hot/itchy hands.  Fortunately it hasn't been bad since that one incident; my onc nurse said to take an Ativan if it happens again.  Hmm - I think the Ativan just makes you feel better, but doesn't really help with the itch!  Vicky Thomas - I have to gain weight also, and was drinking Ensure, which my onc recommended, but it's very sweet.  So my accupuncturist suggested making smoothies with milk, whey protiein and fruit - so I drink one of those every day, in addition to my meals. Bon - praying for your mom.   Hope all ladies have a good week with no SEs!!  Toni

cheyenna

i have #2 taxol tomorrow and im very scared, 10 more to go after that, i dont know if these pills are kicking in yet, im better in the afternoon but i still cry in the mornings, i so worry about my blood counts, im cared they will drop, sis is here now so i feel better but i so wanna be me again, i want to enjoy. im still thinking of Bon and her mom, love to all chey

DesignerMom

cheyenna-  I bet it is hard to tell, but I think you are sounding better, maybe those new meds?  I'm so glad your sister is with you again.  I'll be thinking and praying for you tomorrow.  One day you are going to look back on all this and be amazed at your courage.

northerngirl- So sorry that your mom can't support you more.  Moms!  I had an "interesting" relationship with my mom to say the least.  Having said that, she has been gone 14 years now and I still miss her every day.  Take comfort knowing that YOU are there for your daughters.  The cycle doesn't have to continue. Oh to be young, beautiful and going to Greece!!  Let's all dream we are your daughters and escape for a while!

sherry- Oh you are almost done with Taxol!  One more thing to check off your "to-do" list!   Drink your cranberry juice to beat back the bladder infection.

kittycat

Northerngirl - Wow, your mom hasn't visited you in 2 months???  Im so glad you have your daughters! 

Latte

just had my 5th taxol (weekly), and have an awful (for me) story, that I am sharing because I know others will find it funny (I'm sure that in time I will also laugh)

I started coughing badly through the Taxol this time,and the nurses said it is a known side effect.When I got to the very end of the IV, I had a huge ongoing counghing fit that I couldn't control, and my bladder was full because of all the IV fluids. Well it wasn't full for long :-(  I completely wet myself (while still sitting in the chemo chair) and continued coughing. Then had to run very embarrassed to the bathroom and throw up (coughing does that to me). Didn't have any clean clothes with me, so had to go through the chemo area in soaking wet clothes and say good bye to everyone and slink into my car...

on another note - the nurses are refusing to use my port becsause it has twisted again, so I have to go back to the surgeon to get it fixed (third time...)

PearlGirl

Oh, Latte... I'm so sorry for the trauma of that taxol infusion...but the visual of the drama is kind of funny...not now, but you'll laugh later, I'm sure. The wet ride home must have been something!

Your port is such a terrible problem. Can you have a different surgeon or type of port inserted this time around? 

grneyd5600

Hey Ladies,

First, I am so sorry to hear some of you are having such a tough time witth SE"s.  I am keeping you all in my prayers.  I know several of you are in a lot of discomfort so please know that I am sending big HUGS!!!!

I feel a bit guilty because I am making out relatively well overall with with Taxol TX's.  I have my 3rd one tomorrow (9 more to go after that).  Other than a bit of tingling in my hands over the weekend.  I have been a bit more tired in the afternoon but some of that is from not sleeping real well which I suspect is from the steriod I am getting iny pre-meds. 

RS711 - I did get a RX for the compression sleeve.  I am getting fitted next week and I will have one to wear as I need to help with the Lymphadema.  The antibiotics did help reduce the swelling and they connected me with a physical therapist to help me learn to massage the arm to get some of the fluid moving.  It's all a learning process but I am making out well - Thanks for asking

Kaycee - sorry to hear you are having more surgery but better to get that port out if it is the cause of the infection.  I hope it starts the healing process and you get back on your feet quickly. 

Sherry - sorry your TX got delayed.  Hang in there and your levels will bounce back and  you will be done with the TX's before you know it. 

I hope you all have a good week.  For those getting treatment this week good luck!  Hang in there and remember none of us are alone.  We are in this together!  Sisters always!!!!

Hugs,

VickyThomas

Not having a good day.. full of anxiety, depression and lots of tears.. treatment on Thursday...

DesignerMom

latte-Oh bother!  You just don't seem to get a break!  I would have hoped your chemo nurses would have found some kind of wrap so you didn't have to slink through the facility "wet".  The good thing is that most of the others were probably so zonked that they didn't even notice!  I agree with Bon, I would definitely get a second surgical opinion if you have to have your port replaced again.  That is just awful.

VickyThomas-  Look at you! Nice photo.  It's nice to put a face with the person.  I'm sorry you are suffering from the emotional stuff too.  Has your doctor prescribed something for your anxiety?  Is there someone you like to spend time with?  I find ANY distraction helps me shift my thinking.  I'll keep you in my prayers.

My house is a mess and I need to clean it before this Friday's chemo.  In regards to cleaning, my get-up-and-go ....got-up-and-went!  I am remindng myself that I probably can't "catch" anything from my own dirt and germs anyway...any excuse not to clean.

Latte

hi everyone,

thanks for the sympathy about my "accident" - it was actually OK, and so much worse has happened to me, and I am already laughing about it.

Bon  - I hope your mum is doing better.

grneyd - my taxolSEs seem to be similar to yours, I think the weekly txs are generally easier for a lot of us

designermom - i asked the onc nurse the same thing -  i said that the surgeon has had two tries to get it right, can I try someone else this time? but she told me it is important to go back to the same one because he knows what problems I have had alreaqdy. my port is actually working, but it is extremely slow so the nurses think the catheter is maybe twisted and they are worried it will break.

chey - about blood counts - i assumed that they just continue to drop gradually until the point where we need a transfusion, but this week (after my 4th weekly taxol) they got better, which surprised me. I asked the nurse, and she said there is nothing I can do, but somettimes they go up and sometimes they go down, and there is no point worrying about it because it;s not in our control.

another funny thing happened to me - i rushed out of the house yesterday morning and in the elevator at the clinic on my way to do blood tests i was getting strange (stranger than usual) looks - i turned to look in the mirror and realized I had left the house without anything on my head (which i never do). I didn't have a spare scarf in my bag (note to self...) so had to go bald through all my errands, which i hated. then in the afternoon, i ran out of the house again, but this time with my 2.5 yr old daughter, and as we left the house she said "mummy no hat on" so she saved me from having to go through that again :-)

FireKracker

I dont belong on this thread but i wanted to tell all my sistas that today is world cancer day

I PRAY FOR A CURE FOR CANCER.AMEN

JFV

Latte- I am bringing a change of clothes to my next Taxol!

Vickey- Hang in there I am having a bad day too.  I always do as I get close to the next infusion.  I think it is knowing I'm gonna feel ill again after a few nice normal days.  People keep telling me that while the chemo is killing our cancer it is also killing the chemicals that help us feel happy.  So, don't be too hard on yourself.  I second designermom.  Try to find a distraction.  I took my kids to the Mall and did well this afternoon.

Grannydukes-Prayer from sistas is always welcome!

grneyd-  I'm glad you are doing so well! I do find Taxol easier than AC.  For me the mental game is harder since I am going through menopause and getting bored.

designermom-Funny thing about housework.  No matter how good I feel or how bored I am I can't find the time to clean or cook. 

DesignerMom

latte-  I don't have a port, so maybe I'm missing something.  About the catheter being "twisted", wouldn't that be due to how it was inserted?  It's not like you are holding on to the end and twirling or anything!  Even if you decide to use the same surgeon, I think a consultation with another one would be justified.  Didn't you say you had a hard time swallowing with the first port? Maybe you need a different model of port.  I would ask whatever surgeon how many ports he has inserted.That should give you good information.  Even if it is just to ease your mind, double checking with another surgeon might be good.  Also, nurses are biased sometimes and of course any "new" surgeon would have your records so they would understand what happened before. Good for your little one to keep track of your head coverings.  I have assigned the task of flooding me with liquids to my son.  He takes his job seriously and thinks he is part of what is making me healthy again.

RS711

latte, what kind of port do you have? I have a powerport and have not had any problems...

Is anyone getting ready for rads? My onc said that I should schedule a consult soon... I'm scared...

DesignerMom

RS711-I'm headed for rads too, meet with my Rad Onc next week and then my simulation on 9/13.  I think they tatoo you then?  It's all very weird and yes, scary.  I have to say I adore my Rad Onc.  Not only is he astonishingly knowledgeable, he has a great personality and is FUNNY.  Heck, if I have to  do this radiation dance, it might as well include a little free entertainment!

Latte

dedsignermom and rs711: i have a powerport - the problems i am having this time are not the same as last time. Last time, the actual opening under the skin twisted around so it couldn't be accessed. this time, it can be accessed fine, and the nurse can check it by injecting saline? into it directly and it is fine (because the liquid is being pushed), but when they try the IV drip, it drips far too slowly, like there is something obstructing it. the Taxol has to be given at a certain number of drops per minute, and that works fine because the machine forces the drips through, but the nurses say this is against protocol because it might burst or something. so they want me to get it checked before they will use it again. the surgeon does approx 5-10 ports a week, and he said that this was the 2nd time in 25 years that he saw my last problem happen. Sigh, I'm special... (Oh, and about the swallowing issue - i saw the surgeon again and he said that this is a known side effect and will get better within 2 weeks when the tube "settles" - and he was right, just wish he had told me earlier...)

the problem with the health care system here is that i can get to see a dr almost immediately and for free for anything,but i need to go to the dr i am told to see. this surgeon does all the ports for the patients where i am being treated, and so i believe i would have heard rumors around if he was no good. anyway, i should have an appt later this week so i will update you all. 

the other annoying thing is i am having a brain CT tomorrow (unexplained headaches for a couple of months now) and I won't be able to use the port for it :-(

TMarina

Latte--> I hope this time they fix the port and you don't have any more problems with it!  Thanks for sharing your embarassing (yet funny!) stories!  Leaving the house without my scarf would be like a nightmare!  I took the dog out to our backyard the other day without it (by accident!)and I felt so naked!

Chey-->  Hope everything went well for you today!

Vicky--> thinking of you and sending hugs!  Try to enjoy this time with your family--kids are a great distraction!

I had bad pain with the Taxol day 3-6, and took percocet as needed (ibuprofen didn't touch it!), but now the pain has faded to an occasional ache.  I am so pleased that this chemo is easier than the others I've had before!  I have a bit more tingling and numbness than before, and some days I'm more tired, but overall it hasn't been too bad!

Today I went in for my 2nd Herceptin.  I was there about 45 minutes.  The Herceptin itself only took 30 minutes.  Thanks to some prayer I received at church, I don't get the nausea that I used to get just walking in the door to the hospital anymore.  The last 2 times I haven't even taken ativan like I did every time I went.

TMarina

RS711-- I start rads the end of Oct., 2-3 weeks after I finish taxol.  Sometimes it seems like this treatment will never end! Then there's the possibility of recon next summer...grrr!

cheyenna

Tmarina mine went ok today, no prRblems in chair. i have had no bone pain (yet) lol am worried about that. im glad your doing good, thought about you..

Latte, you funny girl, what are we gonna do with you? you poor thing. you have been put through the ringer, i hope all goes well with the port AGAIN, your in my thoughts and praying all goes well.

sherry,i hope you doing well, im thinking about you, i have 10 left..wow!!

Vicky,im so sorry about your day, your too bouncy! put those those big girl pants on, as you tell me ,just dont let them fall off like mine  ALWAYS seem to do.

Bon im hoping your mom is doing better, have not heard, we are all still praying!!!

jfv im glad you turned your day into a good one, im still having problems with that!!

grneyd5600 im so glad your getting through Taxol ok, so far so good for me,just still trying to get my emotions under control. today was my second weekly

DM thank you, im really trying

Kittykat thank you, i was starting to think my ONC is pawning me off cause she dont like me asking questions,

Northerngirl thanks, im hoping so..

My second Taxol went well, i didnt cry today but i have been very shaky, i wonder if it maybe side effects from the new Anti D, my sis leaves tomorrow so i hope i dont breakdaown again, im really trying, today was no time for it since i had blood tested then off to chemo.

im wondering what do you look for on your CBC or your CMET to see if vit D is low?, MY ONC wont tell me anything, unless i need to know she says, but i have questions and she gets upset when i ask too many, she wont even tell me when the cut off is for chemo when my blood counts go down, says we just wait and see what happens. i asked the nurse today and she said white counts now lower then 3 and hemoglob no lower then 8.my white cells were 6.2 and HGB was 11.4.....On my CMT my GLU was 145,and118 is the high? what is GLU? my CRE? is 0.3 and the low is 0.6. i forgot to ask the nurse what these were. anyone know?

LOVE TO ALL!!!, CHEY, AND A GOOD WEEK TO COME!!!!

DesignerMom

cheyenna-Hooray!  You did it again!  I'm so proud of you.  I have a feeling your Onc doesn't want you to worry or fret over your bloodwork.  I don't even ask specifics about mine, just want to know my counts are in the normal range.  I don't think they test for Vitamin D routinely.  I think that is a separate test that needs to be ordered.  I'm going to ask my Onc this Friday, I'll let you know.  GLU could be glucose  CRE could be creatinine?  I find I get more info from my chemo nurses than my Onc. about bloodwork. Sleep well, little one.  Don't forget to drink your fluids!

TMarina

Good to hear from you Chey!  I don't think those with weekly Taxol get much bone pain, so hopefully you won't have to deal with that. Like Designermom said: You did it!!  Try not to worry about your bloodwork.  Sometimes they drop low, and tx has to be delayed, but that's pretty normal.  Happened to me several times last year, each time I was disappointed, but it always turned out that things worked out better for me.  The blood counts ALWAYS come back up, so no worries!  Let the doc worry about the numbers.  But, yes, the nurses are a wonderful source of info, so if you really need to know something, ask them.  My doc did a vit D test on me once (I don't remember why, but there was a specific reason), but that was the only time I had it done.  I think Designermom is right about what glu, and cre are.  Creatinine is either liver or kidney function, I don't remember which. I do know that chemo causes these numbers to flucuate a little, so the docs don't worry too much unless something is really out of whack. 

I hope you can get out and do something fun this week!  Our weather is going to be beautiful the next few days, and I plan on being outside enjoying it as much as I can!

NorthernGirl

Hey girls

Gosh things are getting complicated for us. Latte, I can't believe what you are going through with your port. With so much work going on to correct your port, won't this cause lots of scarring on your chest? 

I am not crazy about having this hard bump in my chest, but I am so glad that the port works. I had two infusions in my arm (about 2 months ago) and I am still bruised and sore.

DesignerMom:  You make me laugh. I go through a cleaning/cooking binge before my treatments too, knowing I won't feel like doing anything afterwards. With all the heat, and all that's going on with me, I really don't feel like mucking out. I am lucky that I have a Jedi Janitor daughter. She's awesome.  

Wow, I'm getting weird sensations in my hands and feet. This Taxotere is lots of fun. I am so weak. At least I find that I am not as emotional as with the FEC infusions. And the Gabapentin really helped with the bone pain. Yay.

Haven't heard from Trusting in a while. I hope things went well with your infusion last week. Take care!

Here's hoping for smoother sailing girls.